GAME CHANGERS POST #2 ANTIBIOTICS

I am not writing these posts in any particular order. If I were, this post would be number one. The #1 game changer in my treatment has been antibiotics.

Please, Lymies, I beg you, take your antibiotics! Every article I’ve read, and every story I’ve been told of people recovering from Lyme has included antibiotics. At this point, the consensus from doctors on the front lines seems to be antibiotics are crucial, and if the diagnosis is at all delayed, then more than the standard 21 to 30 day course is necessary.

(Some tags for this post: biaxin, clarithromycin, metronidazole, amoxicillin, doxycycline, bicillin, rocephin. plaquenil, success stories, how long do I have to take antibiotics for Lyme)

The problem with antibiotics: They are not fun. A lot of patients stop taking them.

Yes, I know you will feel worse when you start on these meds: this is called the Herxheimer reaction. Yes, the herx can be gnarly, but hang tough. Be strong, take your meds.

You can do it, I know you can! I’m rooting for you, Lymies! Once you get through it, you’ll feel better.

I had to dig deep into my old boxes of medication to find
this long-ago expired bottle. Why? Because I don't take abx
anymore. You'll need these nasty meds, Lymies,
but fear not, they're not forever. 

LET'S GO INTO DETAIL

This was going to be a short-and-sweet post, but—well, I tend to write a lot.... Read on if want more on my personal experience, or if you’re still in doubt about taking antibiotics. Or if you want reassurance and bucking up that it's really worth it.

Once I was diagnosed, I myself wasn’t sure if it was the right treatment route for me. I talked to as many people as I could about it, and hindsight I'm very glad I chose antibiotics. In hindsight, it seems like a no-brainer. At the start, I had a lot of doubts. This is natural.

Doubt can come from some deep part of our brain that does not want to be sick. Just getting to acceptance that this is happening can be hard. From there, i

I saw this in pattern in a woman who showed up at a Lyme support meeting. This woman had been diagnosed within a few months of the onset of her symptoms, she'd been taking antibiotics for two weeks, but was ready to quit. Everyone at the meeting was telling the woman she needed to stick with the antibiotics, that they would work. But this woman kept saying no, she was feeling so much worse on the antibiotics, she thought it just wasn't worth it. (Yes, easier to tell yourself it's not such a big problem. Maybe you should just take some vitamins and work on positive thinking.)

Also at this meeting were people in wheelchairs, people who had been so unfortunate as to have gone far too many years without a diagnosis, or without the correct treatment. Yes, if Lyme goes untreated on for too long, it can get you to the point where you can't walk. The people in wheelchairs were telling the woman to take her meds and stick with them, before it got really bad, but the woman in doubt seemed incapable of putting it all together.  

The longer you wait and delay treatment, the harder it is to beat the illness back. Given time, the Lyme bacteria has a way of rooting itself into places the medication can’t get to. (Not yet, anyway. This is something researchers are working on.)

The woman in doubt didn’t understand how lucky she was. I wanted to pick her up and shake her and tell her how blind she was to the tremendous luck she’d had. She’d walked into a standard doctor’s office and gotten a diagnosis right off the bat, with the Elisa test! I would have given anything to be able to turn back time to the early months of my illness, to have had that early test come out positive instead of the false negative I got. Give me a time travel machine, and this is the first thing I’d do: Get myself diagnosed on time, and give myself early treatment.

I went eight years without a diagnosis, with the illness slowly, steadily progressing. Meanwhile, based on incorrect medical information (that I didn't have Lyme disease) I went on an endless quest from one doctor to another in search of a reason for why I was so sick. If I’d had a timely diagnosis, I would have gotten a decade of my life back.

GOING DOWN A RABBIT-HOLE

I hardly ever think along these lines, because I have an incredibly good life right now. but I’m going to lay it out, in case you’re someone who’s in the early stages of infection. In case you're someone who feels a little run-down, has some weird symptoms (like trouble sleeping, mixing up words when you speak, sensitivity to noise, trouble concentrating), and you're wondering if this Lyme diagnosis is worth it. 

Feeling like hell, but looking fabulous (as everyone told me).
Groan--that was a bad insider joke for the chronically ill.

Here’s what probably would have happened in my life in that decade, but didn’t, because I had Lyme that went undiagnosed and untreated:

THINGS THAT DIDN’T HAPPEN TO DUE LYME

-Continuing my job/career

-Going to graduate school

-Getting married

-Having children

-Continuing to live independently (i.e. not at my parents’ house)

Instead I was having Lyme. Yes, in my parents’ house, dependent on them to do everything for me. And yes, at the start, like this woman at the support group, I wasn’t bedridden. I limped along through work, exhausted but getting by. I could still read, I went on short walks, but going running was leaving me wiped out and things were getting worse. In time they were a nightmare.

If this woman would stick with the antibiotics, she could knock the bacteria out of her body before it took root. She’d likely go on to have a healthy, normal life. An entire room of people were telling her this, but she was having a very hard time hearing it.

Why not turn around if you see this up ahead?

It was as if she was driving along the highway, saw a giant conflagration of a ten-car pile-up in front of her, and decided to keep driving her car straight into the wreck, because 1) it was going to be really inconvenient to turn the car around and find a different route, and 2) she wasn’t feeling all that bad right now.

Please, people, take your antibiotics!

This is how a lot of medicine works: Medicine it is short-term inconvenient, but in the long-term, it's extremely convenient.

If you were diagnosed with cancer, would you skip chemo because it makes you feel bad?

I understand how hard it is to come to terms with having a difficult illness and a difficult treatment. I hope this was all this poor doubting woman was going through. She just needed time to get her head around it. I hope she went home and gave it some thought, and the message from the support group got through to her, and she stuck with her medication.

MORE ON MY STORY, ANTIBIOTICS-WISE

I was at last diagnosed with Lyme in 2007 (my symptoms started 1998 and became overwhelming in 1999). I’d finally found a great doctor (Marty Ross) and I also have had wonderful naturopaths helping me through. (Amy Derksen and Nesreen Medina, and Carolyn Humphreys.) I took heavy-duty antibiotics for three and a half years. If I’d started the treatment at the onset of my illness, no doubt I would not have needed quite so many years of antibiotics. If it had been caught right away, I might have only needed a few months of medication. 

My doctor, Marty Ross, worked with me to ramp up each new antibiotic, so that the herx was what I could manage. He also explained very clearly that the improvement I’d see wasn’t from day to day or even from month to month. The change would be gradual. After the first six months, he told me, I should look back to where I’d been at the start and see if there was a change.

Yes, he was right. At six months I wasn’t cured, but I could easily walk for a couple of miles. That had been impossible half a year earlier.

Rinse and repeat.

This is me on top of a mountain. I climbed it myself.

So eventually you might be hiking on snowy mountain tops,
and your dog will come too.

HANGING TOUGH

Yes, at one point I gave myself my own giant, painful shots in the butt for some of the antibiotics. The first was for an antibiotic called Bicillin. I thought I could never manage it, but I did. (A little more about that here.)

Rocephin is the antibiotic that seems to help people the most—the famous IV antibiotic. Because I have chemical sensitivity, when it came to Rocephin—I couldn’t have the plastic IV line in my body, so I did a daily shot of Rocephin as well. In that form, the needle is wide and the antibiotic is like sludge, which meant I couldn’t do the injection myself. I had my boyfriend and family give it to me. We went to the doctor’s office and had the nurse teach my boyfriend how to do it. It hurt like hell, each time. I did the shots for 11 months, and at the end of the time I was running and swimming again. It was, literally, a miracle.

Thumbs up for another cute dog picture: Cleopatra
swims with me, too. Part of the miracle!

However bad the antibiotics make you feel, remember it’s not forever. You’ll get better and you’ll get off them. I’ve been off antibiotics since 2011, and I’m doing fine. I’m on an herbal protocol to keep the Lyme in check. Keeping myself healthy is not always simple, but my life is a world away from what it once was.

On more note on Marty Ross’s “gradual ramp up” approach: I know doctors believe in pulsing, and I’ve read this is also very effective, but yes, the herx can be rough. Whatever your choice, please Lymies, TAKE YOUR ABX! Keep taking them until you feel the change! Don’t expect the change to come quickly. Have faith that it will come. It will.

Do your best to patiently explain to friends and family what you’re going through. It might help to have articles printed out to hand them to friends and family, so you don’t exhaust yourself talking about it. Lymedisease.org is a good place for that information. And don't hesitate to ask people to support you, especially in specific ways—small things that have beginning and an end. Like bringing you dinner, or picking up some groceries for you, or coming over to watch a TV show with you.

If you want to do rife, homeopathy, herbs, supplements, acupuncture—yes, go for it. But don’t skip your antibiotics. Apart from rife, I’ve done all these things, and while they have been helpful, my experience has been that they aren’t a substitute for antibiotics. TAKE YOUR ANTIBIOTICS!

MORE COMING SOON

In my last blog posts, in December, I promised an update on the blog's favorite heroine, the Chronic Princess. Unfortunately, that post isn't here yet...but in the meantime, who doesn't love a good podcast? I have recently become a big fan of Reply All. Sruthi Pinnamaneni is an excellent reporter, and she'd done some very good posts on illness and medicine. Below are links to episodes that feature her stories. What stood out for me in first one (Second Language) is the journey of acceptance. The second one  (Boy Wonder) has quite a few parallels for Lyme patients who have suffered through mis-diagnosis and late-diagnosis. At the end, a Yale doctor, Lisa Sanders, speaks intelligently and unconventionally about the difficulties of diagnosis. Thank you, Dr. Sanders, for speaking to us all like we're adults!

https://gimletmedia.com/episode/88-second-language/

https://gimletmedia.com/episode/75-boy-wonder/

ONCE UPON A TIME

I have been postponing writing about some difficult issues. These are posts I need to write, however hard. I’ve found it easier if I write in the third person. And so, bring on the alter-ego. Introducing the Princess of Lyme Disease.

The Princess, on the left, wearing a costume she made out of paper bags. 

          In the city of Seattle there lives a princess. This particular princess is fond of writing and dancing, making costumes and headdresses, and growing nasturtiums and pea-vines her garden. She likes to go out to the Century Ballroom for swing dance nights, and to the Green Lake to walk along the path with her friends or to swim with her faithful companion, Cleopatra. Mostly, however, the Princess stays at home, in a very special tower where she knows that nothing will do her harm. In the world outside her tower, things are quite different. This is because of the List of Things That Make the Princess Feel Terrible. This List is part of the spell that traps the Princess.

THE LIST OF THINGS THAT MAKE THE PRINCESS FEEL TERRIBLE:

car exhaust

tar and asphalt fumes

adhesives, such as liquid nails used in construction, and glue guns

new construction materials, in general

paint, even the ‘non-toxic’ kind

new furniture

Sharpie markers

tap water

tap water that has been through a Brita filter

tap water that has been through the supposedly wonderful Custom Pure filter at grocery co-op

many brands of bottled water

body care products (except for one or two brands that are truly chemical-free)

cologne, perfume, and body spray

the hand soap in public bathrooms

almost all brands of laundry detergent

cleaning products, almost all brands

air fresheners

sugar

food preservatives and additives, including ‘natural flavoring’

most of the food in the United States of America, because it contains the previous items

jet fumes

the air at the airport, which is filled with jet fumes

(As per these last items, the Princess finds it extremely difficult to travel by airplane. Indeed, before she figured out the importance of securing a seat in front of the wing (the Princess always flies economy, because it’s the only way to go), so that she would not be breathing the exhaust that slips into the cabin from the engines located on the plane’s wings, the princess usually came down with splitting headaches and vomiting from airplane travel. Now she simply feels worn out, light-headed, and extremely vulnerable to panic attacks. (As for panic attacks, we will address them anon.) And so she takes an airplane trip only once or twice a year.)

Come to think of it, there is one last item on the List of Things That Make the Princess Feel Terrible:

Mold!

Mold is found in:

basements

all air conditioning

all automobile air conditioning

damp houses

old books

blue cheese

The Princess does not live in dread of blue cheese—she finds it easy enough not to buy it when she sees at the grocery co-op, and to say ‘No, thank you,’ when it is offered to her by a friend, but she does live in dread of air conditioning, and visiting other people’s houses, and driving with other people in hot weather, because of the question of air conditioning.

In general, given The List, you might say that this princess’s situation is much like the one of another princess, the Princess and the Pea. For this princess, however, the pea is not a tiny vegetable tucked under a pile of mattresses. For our Princess, almost the Entire World is her Pea. Whenever the Princess leaves her home (where she has taken great care to be sure it contains none of the things on The List) she runs the risk of coming into contact with the things on The List and feeling extremely unwell.

THE PRINCESS’S BACKSTORY

But who is this Princess? She was not always such a special person trapped in a tower. As a child and a teenager, she was a typical over-achieving member of the upper-middle class. She grew up in Washington, D.C., zooming her way through private elementary and high schools on her way to a prestigious, you might even say snotty, college, where she was always engaged in some sort of high-energy, creative pursuit, not to mention studying for her classes with a fervor that was a like a religion for her. She wrote poetry and spoke foreign languages; she wrote long term-papers female scientists, and magical realist novels, she played rugby; she volunteered with the homeless and taught English to immigrants, and, well—you get the picture. She had a lot of Energy and liked Going Places. When she graduated from college, she worked as a newspaper reporter in foreign lands, and fell in love with a charming young man in one of those lands, and thought she might live abroad as and lead an interesting, bi-national life.

Suddenly, however, she came under a spell and was left without the strength to walk, or stand on her two feet, or read, or some days even to watch TV. She lay in bed, sewing quilts by hand, which was the only pass-time left for her. Helpless as she was, she moved back to live with her parents’ (the King and Queen of Kindness and Equanimity). The years went by and the Princess sewed many quilts. She also went to doctor after doctor, for years—eight years—but none could lift the spell.

At last she found a doctor who, although he could not lift the spell, could name it. It was called Lyme Disease, and this doctor partially beat back the spell by giving the Princess an infinite number of magical herbs and potions. Although the Princess hoped she would be cured, alas it was not so. The spell was far too strong for even this doctor, and other doctors who she has turned to for additional advice. She still has to ingest her potions every day, at precise hours, following an infinitely complex pattern that is always shifting slightly from week to week and month to month.

If the Princess follows the advice her doctors, on most days she has the strength stand on her own two feet and walk, indeed she can run and dance, and create dancing girl costumes, and cook for herself and wash the dishes, and take care of her faithful companion, Cleopatra.

Outside the tower, with Cleopatra

Cleopatra

But do not be mistaken. The Princess is still living under the spell which, despite all her efforts, as of now has not been broken.

COMING TO TERMS WITH BEING A PRINCESS

At first the Princess thought she was, despite the spell, simply a woman with a chronic illness, in essence just another member of the over-achieving, upper-middle class (although now a woefully under-achieving over-achiever, due to the Spell of Lyme Disease). The Princess operated under this illusion for quite some time. Meanwhile, while she was still searching for the magical doctor, the Princess had traveled to Seattle. When she found the miraculous doctor in this far-flung city of lakes and bridges and beautiful gardens, she decided it was best that she stay there and adopt it as her home.

Unfortunately, as the Princess grew physically stronger she also became romantically involved with a man who was fond of removing the Princess’s soul and shattering it, leaving the Princess to put her soul back together as best she could. She would then hide it away from this man, until the next time the man ferreted out her soul and put his destructive hands on it—until at last the Princess found the strength to end this unhealthy relationship.

After that, she had spent several years alone, turning down the suitors who came her way for one reason or another, until she happened to meet a suitor who was kind and intelligent, and had a sweet nature. Or, to use a word that might not be as flashy as the words ‘wonderful’ and ‘amazing’ that get tossed around so much on social media these days, but a word that is perhaps more meaningful than those words, the princess found this suitor worthwhile. This man was worth the Princess's time and attention. The Princess became more and more fond of this man as the weeks of 2015 went by.


A SUDDEN PERSPECTIVE

As she spent more time with her suitor, however, she found herself continually explaining to him all the tiny requirements of her life: how her food and pills and potions, and her exercise routine had to be just so, lest she come entirely under the power of the spell. She explained how, despite appearances of health and vigor, she always needed to take care of her delicate nature, including stopping everything in the middle of the afternoon to take a nap. She could not go certain places or do certain things, particularly she had to avoid things on the List of Terrible Things.

And then there was the question of mornings. The mornings were when the spell had her almost entirely in its grip, and it was very hard to do things that most people took for granted, like talking. As the words of explanation flew from the Princess’s lips, she realized that all of these things, while absolutely essential to her well-being, sounded quite princess-like.

MORE THINGS THE PRINCESS HAD TO EXPLAIN

The Princess explained that she had a good witch (a naturopath) who helped her with her magic potions, and also a woman (a lady in waiting?) who came once or twice a week to help her with the time-consuming tasks of her life, such a picking up medicine and helping out with cleaning, so that the princess could better fend off the spell every day. And also there was the most embarrassing part of the Princess’s existence, that she did not have a job—not one that earned her any money—this was something that made the Princess feel extremely self-conscious, when she met new people and they asked her about herself. Although anyone who knew her well could not see this as a shortcoming, given her burden of living under the Spell. On the other hand, she did have her ‘work,’ which was writing magical stories and taking classes in how to get better at writing these stories. (Due to her lack of a job, the Princess was on a tight budget, but she took good care of her tower and rented out rooms in it, and so she got by.)

As she explained all these things to her suitor, the Princess realized that if she sounded so much like a princess then it was likely that she was, in fact, a princess. This was quite a realization for her.

Given all her experience fighting off the spell, she also realized it was not likely she would ever have the privilege of being a normal woman again. And so she reluctantly accepted her fate of being a princess.

The Princess and her BF after a long day at a parade.

THE PRINCESS’S TOWER

The Princess lives in a periwinkle colored house—that is, ahem, a tower. A tower which the previous owner covered in aluminum siding, which siding the princess has left intact, although she has painted it with low-toxicity paint in a very agreeable color. The tower is in a pretty little neighborhood called Wallingford, full of jubilantly-growing gardens, and where real estate prices are skyrocketing due to Jeff Bezos’s manic expansion of his company called Amazon. The Princess shares her tower with two other ladies—smart, creative, strong women who understand the spell and are considerate of the Princess’s requirements, and sometimes stop to listen to her tales of encountering People Wearing Too Much Perfume, but mostly these two women just get on with admirable their lives.

THE DAILY ROUTINE OF A PRINCESS

Before the Princess gets out of bed every morning, she takes some pills that replace parts of her endocrine system, which the Spell of Lyme Disease has permanently damaged, she waits twenty minutes, then gets up and goes for a short walk with her faithful companion, Cleopatra. On the walk she reminds her self that this is the worst part of the day and that she will feel better soon. She does deep breathing. When she is back home, she slices up an apple and makes herself a cup of coffee and sits down at her computer to write her stories. She takes a break for a walk and lunch, and then she takes her nap. After her nap she works again—either at her stories, or taking care of her tower or her healthcare—seeing her doctor, paying bills, organizing her potions, answering emails, or preparing her special food. At about 5 pm she does her exercise: swimming, running, or dancing.

Throughout the day, the Princess takes her potions—some on an empty stomach, some after her meals, some when she lies down to sleep. The Princess thinks a lot about her potions and pills, partly because they are so complicated that she has to always be paying attention in order to take everything at the right time. But she also thinks things like, who am I? Am I myself, the Princess, or am I this compilation of endocrine supplements, hibiscus flower tea, B vitamins and little pills called Heart Gems? And if these things suddenly are no longer available, then what?

But it is no use worrying about such things.  For now she is grateful for the potions. Although they have not cured her or freed her from her tower or naps or the List, they have at least freed her from lying in bed all day.

There were times when her doctors, despite their best efforts, gave the Princess the wrong powders and pills—times when her hair got so thin she could see her scalp, or she lost far too much weight, or felt so sad that she had to sing songs to herself in order find the will power to simply get up. There was also a time when the Princess tried stopping all her potions, and the results were also extremely unpleasant. Now she feels that the potions, though more complicated than she would like, are doing a good job.

All in all, it is a beautiful life the Princess leads. Relative to how she has felt in the past, relative to other people she knows who are suffering under similar spells, the Princess realizes she is fortunate. That is, as long as she follows her routine and stays in her tower, occasionally leaving to visit the places she knows are safe for her, places where she is not likely to encounter anything on The List.

            The next post will be about chemical sensitivity, or The List of Things That Make the Princess Feel Terrible.

GOING TO ELEVEN

The backyard, a place for yoga and in general doing things slowly

            A week ago I had a day that didn’t go as planned, thanks to Lyme, but I managed to jot down these thoughts in the evening. So here’s another post, a bit overdue!

  

From Weds August 12:

I pulled myself out of bed this morning feeling far too spaced out—not the regular morning aches, but a floating, almost loopy feeling that I recognized. It’s my brain’s way of disconnecting from how at the bottom of it all, there’s something crummy going on. Although it was a weekday, my boyfriend had spent the night because he was going away in the afternoon, and we’d both been hoping for a bit of connection in the morning. Knowing I wasn’t capable of even a few minutes meaningful of conversation, I encouraged him to get an earlier start on his trip than he’d planned. It didn't make any sense for him to hang around, with the way I was feeling.

Alone, it was a little easier to face the complicated tasks that lay ahead—picking up the dog’s leash, for example, and putting it on the dog; pulling the door key from my pocket, inserting it in the front door and turning, then walking out to the sidewalk with the dog. These things are not hard, but this morning they seemed far too much for my brain and body. It  was as if my surroundings were a giant boulder and I’d woken up as Sisyphus—yes, again, this morning, again. My soul and the world were not one.

            It was a day for doing everything slowly. After I managed by a small godsend to make myself coffee, I opened the story I was working on and wrote at a meandering pace while I ate an apple, setting aside the goals I’d had for getting certain things written. An hour or two passed while I inched along like a sloth, and I dropped my plans of doing errands. It wasn’t that I was tired so much as it felt like my brain was living in one world and my body in another, and how was I to get the two of them together into the car, and after that go shopping?

            I do a kind of mind-body therapy called Self Regulation Therapy (SRT), and my angel of a therapist calls this feeling dissociation. When we reach the point of dissociation, the brain is simply overwhelmed with whatever’s going on in the body, and often vice-versa. Which brings us to the question of why. Why today, in particular, was I feeling what I was feeling? I had some suspicions. My Lyme meds probably needed readjusting, for one. I don’t sleep well if I don’t have enough Lyme medication in my body, and over the weekend I found myself wide awake at 3 a.m. I’d scaled up on one herbal tincture perhaps a little too much in order to get to sleep, so I probably now had an excess of toxins from dead Lyme bacteria in my body, more than I could comfortably handle.

            That might answer the question on the technical level, the Lyme disease level, but these technicalities usually just leave me feeling rotten for a day or two. Why the dissociation? At another level I knew it was my body’s reaction to too much stuff going on--meaning not enough attention to the illness I’m living with.

I tend to be reclusive, spending my days at home where I can write and at the same time hide from all the loud noise and toxic fumes and demanding social interactions of the greater world. At the end of the day, I usually come out of my turtle shell and go for a long walk or swim with a friend, or to dance class. Then I come home and eat insanely healthy food for dinner, followed by a 40 minute medical routine that includes counting out three or four different herbal tinctures drop by drop, mixing up powdered supplements, some in water, some in juice, taking a wide array of pills, making herbal teas that I will drink during the night, and finally giving myself an injection. (Yes, it all seems crazy to me too, and I do it because it works and keeps me off antibiotics.) After all that medical stuff, I'm exhausted, so I go to bed.

But this year (the year I am 42, for all the Douglas Adams fans reading this) the Universe has been throwing me a few loops. The Universe has been coming on strong, messing with my hermit-writer-chronic-illness-management routine. The Universe has been asking me a lot of questions that have only one answer: Yes.

            Would you like to take a week long, all day writing class with one of your favorite authors?

Would you like to date an extremely cute, intelligent, and interesting guy?

            Would you like to get a literary agent?

            Would you like to be one of the lead dancers at the start of the Fremont Solstice Parade? (For non-Seattlites, that’s the city’s big, annual arts parade.)

And make your own dancing girl costume, with feather headdress?

Would you like a visit from one of your dearest friends that same weekend?

            Yes yes yes yes yes.                           

            The Universe threw in a few other socially demanding activities, like changing roommates and hosting a fundraising party for said Solstice Parade—and then just when it seemed things would chill out for the 4^th of July, instead I spent the holiday meeting many of the cute guy’s numerous relatives—well, none of it’s been bad. In fact it’s all been pretty wonderful. It’s also quite a lot for a quiet, reclusive, writerly-type.

It’s been as if Nigel (to use another mythic number from pop-culture) has just cranked his custom-made amplifier all the way to eleven and has kept it at eleven for months and months.                                  

            It was almost inevitable that one day I was going to wake up feeling dizzy. Instead of errands, I had to slow things down, and do something that would allow my mind to reconnect with my body. I set my timer for thirty minutes and did yoga at a lingering pace.

Calves-hips-breath-brain.

Brain-breath-torso-toes.

Brain, say hello to Body. Body, say hello to Brain.

Inhale-exhale, bend and straighten, and over again, as slowly as I needed. And then it came, the connection. Everything felt awful. My brain hurt and my body felt like it was made out of gray, murky, unpleasant muck. The dizziness was gone.

So why do it? Why not just stay dissociated? Spaced out and dizzy isn’t so bad, right?

I know from experience that no good will come of it. The spaced-out feeling only gets bigger, until everything seems impossible, including all-important dancing and writing, and the paramount of activities, sleep. And the reconnect, when it does come, feels like Armageddon.

The reconnect today was unpleasant, but only about a four on the scale of unpleasantness. Four, you might ask, out of what? Well, I’m realizing I don’t know. The scale of unpleasantness might go to eleven, or eleventy-one, or one thousand and eleventy-one. But I do know that a four on the unpleasantness scale isn’t so bad. There was still plenty of goodness around, and I was thanking it.

I thanked goodness for the dishwasher—most beautiful invention!—and I thanked goodness for my own particular dishwasher because it needed unloading, a realistic goal at that moment, hard but not impossible. I thanked goodness for having a life that allowed me to go at the slowest pace on days like these, plate by plate and spoon by spoon. I thanked goodness for the dog, who keeps me company when it’s too much to have people around, and soon I thanked goodness again for the dog, who requires me to get up and walk a little bit every few hours, no matter what. I thanked goodness for my house that can sometimes look a little disorganized and shabby, but is always bright with daylight.

I thanked goodness for the backyard, full of things that grow, quiet and green.

And I thanked goodness that I’ve been through days like these enough times to have faith it would get better. So I made my way through the next few hours, until it was time to rest. I lay down on the bed and listened to someone on a podcast read Michael Cunningham’s story, “White Angel,” and I marveled at Cunningham’s beautiful sentences. Before the story could come to its sad ending, I fell asleep—the kind of sleep that overtakes you with indomitable force, the kind of sleep that feels as heavy as iron dragged from earth’s core. I woke out of that deep blackness, realizing oh so gradually that I was myself: I was Noelle.

I was in my own bed. I could feel the bed beneath me. (I think this is called coming to your senses.) I didn’t even have to remind myself to be thankful for the bed. I just was. I felt the thanks and the goodness throughout my body, a feeling of peace and comfort between my body, my brain, and my surroundings. This is why it’s important to slow things down, as hard as it can be sometimes--because there is simply no substitute for it, and because it makes all the difference.

THE PUNK SINGER

The musician Kathleen Hanna is coming to Seattle next week, a good inspiration to get this written and up on the blog!

Warning, this post is a SPOILER for The Punk Singer. If you haven’t seen the movie, go watch it now, then come back here and read.

*

Last summer, the movie The Punk Singer was chasing me down. In June, Beth, from my dance group, told me I should watch a movie she’d just seen, a documentary about the lead singer from Bikini Kill.

“You know, Kathleen Hanna?” Beth said. “She had Lyme disease and she had to stop singing.”  

I smiled and nodded at Beth and thought to myself, ‘Nope, I’m never going to watch that movie.’

A couple weeks later, my friend Lynn told me I should watch The Punk Singer. Again, I thought, ‘Nuh-uh.’

A few days later my new roommate, Jessica, told me I should watch The Punk Singer.

Given the way it was chasing me down, this movie might as well have been green eggs and ham.

And I did not like it.

Why the Sam-I-Amitude?

It’s not that I’m against punk music. To the contrary, my feet have spent their share of time in Doc Marten’s, and I still have The Clash and The Ramones in my playlists, although I’d never heard of Bikini Kill (they were a few years after my punk days, it turns out).

No, it was the thought of a movie about someone with Lyme disease that turned me off.

I devote too much brain space to Lyme as it is. All day long I’ve got Lyme threaded through my thoughts and in my peripheral vision. The one time I am reliably not thinking about Lyme is when I’m reading or watching a movie. I didn’t want the damn disease invading that corner of my life too.

On the other hand, I maintain the policy that when the universe shoves something at me three times, I should give it some consideration.

Filled with doubt, I found The Punk Singer on Netflix and started streaming. ‘Just the first ten minutes,’ I told myself, ‘and if I don’t like it I’ll watch something else.’

I watched through to the end and never once thought about turning it off. Kathleen Hanna is a force to behold, one of those people you’re ready to worship for her sheer energy and creativity and the positive impact she had in the world.

I was out of the country in the late 90s, when the riot grrls were happening, so the movie filled me in on that later wave of punk music and feminism. The documentary also covers Kathleen Hanna’s second band, Le Tigre (post-punk electronica) whose music is fantastic. (I’ve been listening to Le Tigre non-stop since I saw The Punk Singer.)

And there was one more remarkable thing about this documentary. An hour into it, I was sobbing. Because, yes, this is also a movie about Lyme. I was experiencing text-book catharsis thanks to The Punk Singer. The tears washed through me with a momentum of their own, tapping into a sadness I’m usually quite good at ignoring. I felt release, and connection, and that I wasn’t alone in my daily battle with this alien thing in my body. I felt (and this to me makes no sense, but I felt it so I’m going to say it) that if someone as amazing as Kathleen Hanna had Lyme, then it wasn’t quite so bad that I had it too.

The moral of the story: I was wrong not to want to watch a movie about Lyme. Far from being a drag, it was a good thing.

In fact, The Punk Singer beats out all the other movies I’ve seen about Lyme.

I acknowledge that ‘Movies about Lyme Disease’ is not a big category. OK, this is a category contains two movies as far as I know, and The Punk Singer is one of them. So I might as well just say it: I prefer The Punk Singer to Under Our Skin.

Why? Because The Punk Singer is a movie about Lyme, but first it’s a movie about a remarkable person, someone intelligent, headstrong, talented, and putting that talent to good use. It’s about a woman determined to change the world, who was moving people with her music, inspiring younger women to stand up for themselves, and bringing a much-needed dialogue about sexism back into the national conversation.

Just when the world was saying feminism was a washed up remnant of the past, Kathleen Hanna brought feminism back by bringing punk rock to feminism—how cool is that.

Then Lyme crashes in and knocks her to the ground. Kathleen stops singing. She disappears from the music scene and no one knows why. She goes years without a diagnosis. (Is this sounding familiar, my fellow Lymies?)

Once she’s diagnosed, Kathleen bravely lets the documentary film makers record her struggle with her Lyme meds, including some not so flattering moments. The camera follows her as she later makes her way back into the greater world, still giving herself injections, managing to keep Lyme at bay so she can take the stage again; but the movie leaves us with indications that Lyme might always be a struggle for her, and that she’s now negotiating her way through life on radically different terms.

Do you want your friends and family to understand what Lyme is like? Tell them to watch The Punk Singer.

ANOTHER LYME PATIENT ON THE MEND and MORE TREATMENT OPTIONS

For this post I'd like to share a recent email exchange. Mimi asked for a Lyme doctor referral years ago. I was delighted to get an message from her a few weeks ago, and to read she's now doing very well. She's taken a different route with her treatment than mine, so I thought this would be a good way to share some of her tips--straight from her own keyboard!

Beautiful vegetables! For both me and Mimi, diet has been a big part of our treatment plan.

(Painting: 'Plate of Asparagus with Carnations and Grasshopper' by Giovanna Garzoni, 1600-1670)

Hi Noelle,

Remember me? I feel like I've been meaning to email you for years to thank you and I am dreadfully sorry that it has taken me so long. You helped me so immensely during what was the worst time in my life and I just wanted you to know that I did and still do appreciate your support during my Lyme treatment.

I hope you are doing well and healthy. 

Thank you,

Mimi

***

Hi Mimi! 

Thank you for the thank-you! Yes, I remember you! It sounds from your email like you're doing a lot better. Don't think I deserve too much credit, just referred you to the right people, but I'm sooo happy if it helped.

I am doing much better, too. 

Best,

Noelle

*****

Hi Noelle,

I'm definitely doing better than I was back then. I hope to never feel that terrible again, but I'm glad I went through it now.  I ended up stopping antibiotic treatment at 16 months because, I couldn't digest food or absorb nutrients and I couldn't function in my daily life. The GAPS diet gave me back my life and helped heal my gut significantly. Somatic Experiencing therapy has also greatly decreased the emotional load on my system and improved my resiliency. Years ago, Dr. Nesreen Medina recommended me to an SE therapist who was also on of their Lyme patients and I still see her today.

I have never really stopped treating, I just switched to natural treatments (acupuncture, herbs, plant stem cells, essential oils) and found that I respond better when I'm not at war with my microbes. I was able to get pregnant again and found that I am one of those lucky people whose immune system actually does better while pregnant so I felt better than I had in years. Too bad I can't stay pregnant.

; )

My daughter is 1 1/2 now and healthy as a horse and so far my 6 year old son doesn't show any symptoms either. 

I'm still symptomatic, but certainly functional. A few months ago I added Doterra essential oils into my protocol after watching a cool webinar where a woman healed herself from Lyme using only the antimicrobial oils. Cool stuff!  I'm also working on re-programming myself and telling my 70 trillion cells that we don't have Lyme anymore. So the journey continues, but in the end it is all positive improvements so I keep working on it.  

Thank you again and I wish you good health!!

Mimi

****

Hi Mimi:

This is all wonderful to read! I am wondering you would mind if I put your email on my blog? (It's a blog about recovering from Lyme.)  

Recently I've received requests from Lyme patients for information about my medical plan (i.e. what works) and I have resolved to get more positive and practical info up on my blog. I had been neglecting it because I was feeling better and not thinking about Lyme so much! 

I've ended up doing something similar to you (minus the pregnancy). I stopped antibiotics and switched to herbs and recently the anti-inflammatory diet. My quality of life is much better, I have less brain fog and more stamina on Samento/Banderol/Teasel. But I also think having done a few years of antibiotics helped. I don't think I'd be as strong as I am now if I had done the herbs alone. I'm curious about the GAPS diet and some of the other things you mentioned. I'll look them up! 

Best,

Noelle

*****

Hi Noelle:

Of course you can include anything you would like to.  I love spreading the word about treatment options. You can slice and dice whatever I wrote and in case you want to include some links....

Here is a link to the Woman's webinar who used the Doterra Oils and another link I found just browsing:

http://aishaharley.me/tag/doterra-lyme/

http://www.faithfulwellness.org/lyme/

Here is an overview on the Somatic Experiencing therapy which helped me miles beyond what standard talk therapy was able to achieve. It has shown me that many of my symptoms are actually psychologicial and I have had sessions where I walked in feeling like I needed to crawl back in bed and walked out feeling energized with my symptoms alleviated (nausea, headaches, brain fog, pain  http://www.traumahealing.com/somatic-experiencing/

The Gaps Diet (Gut and Psychology Syndrome) is all about healing and sealing the gut with bone broths and fermented foods and within 6 weeks on the Intro Diet, I gained a much-needed 6 pounds, could digest food again, tolerate dairy, absorb nutrients, my spring allergy headaches were almost nonexistent and I wasn't starving all the time anymore. Plus my anxiety was gone. I felt stronger and was able to get pregnant 3 months later.  Since then I have done the GAPS Intro diet 3 times and my body goes into serious healing mode each time. I usually experience extreme fatigue and some die off in the first week and I sleep my best while on the Intro diet.  It is an amazingly balancing diet. You will either gain or lose weight depending on what your body needs. I have proof of that because I gained when I was gaunt and then I did the Intro again after pregnancy and lost a few extra pounds I didn't need.  I have never been able to stick to the full GAPS diet for the recommended 2 years for someone like me, but I still get great benefits from the Intro and have incorporated parts of it in my ongoing diet. 

Links:

Author's site: http://www.gapsdiet.com/

http://primaldocs.com/opinion/lyme-disease/

http://www.lovingourguts.com/what-is-gaps-2/

Dr. Elizabeth Hesse Sheehan is my primary (currently on maternity leave) and although I have had infrequent visits, she is the one who recommended GAPS, Plant Stem Cells and Doterra Oils. http://www.experiencehealth.info/default.html

Cheers,

Mimi

Another painting by Giovanna Garzoni: Chinese Bowl with Figs, Cherries, and Bird

TRADING OFF GETTING OFF FOR GETTING ON

The latest installment in the "getting off" series.



More pills than I'd like to be taking, but less than I was taking before.

Four months ago, I stopped taking my antibiotics, my Lyme-killing herbs, my Ayurvedic liver support pills, my twice-daily injections of the blood thinner heparin, and the three doses of Cholestyramine, which was killing my appetite and making me constipated. I cut out iodine and B12 tablets and drastically reduced Vitamin C, multivitamins, and enzymes. I put away out other pills and powders whose names I can't remember now. I'd been taking each of these things because they each helped with specific, hellish symptoms of Lyme. Each pill or injection was warding off some aspect of misery. All together, however, they added up to so much medication that it was difficult to leave the house, eat meals at the time others were eating, or have a phone conversation without interrupting it to swallow something.

The only way to know if I could have a normal life (or a more normal life) was to plain-old stop taking stuff. But stopping taking stuff when that stuff has saved you from being too sick to walk or read or watch TV--well, it's frightening.

"Congratulations!" my doctor said. "This a big step for you to take."

"This is courageous!" said my naturopath.

"It's really, really brave," my mom said. (I was staying with my parents while I went through these medical adjustments.)

I was ready for the Powers That Be to reward me for my bravery. I was thinking all this medicine for so many years might have even cured me of Lyme. I might just not need it at all. I'd have to wait and see.

For about a month, I was OK.

Then I had trouble sleeping. I got back on the herbal protocol for Lyme. I felt stiff and fatigued getting out of bed in the morning. I ratcheted up my Vitamin C. I was better, and then worse again. I added a third herb for Lyme.... Still, I resisted letting things get too fancy. No injections, no appetite-killing drugs, no enemas.

I landed at more or less an equilibrium of feeling more or less how I had while taking a zillion medications a day, only now I was taking six or seven.

Then a tick bit me--which was testimony to how reality, unfortunately, is  not a double-blind scientific study. I decided to take antibiotics for the tick bite, and things got zooey for a few weeks. When those weeks were over, I went more or less back to where I'd been before the tick bite.

That is to say, in the ballpark of more or less; approximately more or less. I was in a different universe from being depressed and fatigued from antibiotics. I wasn't, however, in the universe of feeling ready to move back to Seattle and into a new house as a newly single person. I had my plane ticket back to Seattle, I had a house my tenants had just vacated waiting for me. I'd scheduled movers to take my things from my ex boyfriend's apartment, and I'd told all my friends I was coming back.

And I was scared, because I simply did not have energy for this looming situation.

Thirty-six hours before leaving for Seattle, something clicked. Fatigue, I thought. Thick blood. So I added in one more supplement, lumbrokinase, which is an enzyme that thins the blood. My energy shot back up immediately.

So now I'm back on the Boluoke brand of lumbrokinase. It's not heparin, which I took for years and requires an injection and left bruises all over my body. I can buy Boluoke on Amazon, meaning it's easy to keep in stock.

The reality is my experiment of getting off as many medications as possible is not going as hoped. The reality is being brave doesn't mean you get what you think you should get.

Given reality, I'm glad to be back on Boluoke lumbrokinase. It hasn't cured me of every last Lyme symptom, but I'm in Seattle now and handling the chaos of moving and setting up house with more energy and ease than I had imagined was possible.

SMALL FORMS OF BRAVERY

On Tuesday night I wore this dress swing dancing. I came home drenched in sweat, peeled the dress off, got in the shower, and found a tick lodged in my armpit. Once I had comprehended that yes, this had actually happened, I found my old antibiotics for Lyme, which I'd stopped two months before, and took a dose.

By Wednesday night I was on megadoses doxycycline, which my doctor prescribed to prevent a new infection. I was more or less accepting the fact that after six years of partially successful treatment for Lyme, this was all happening. The Ground Hog Day of Lyme disease.

Thursday night is tango night. I'd already washed the dress, and had moments of doubt about going to tango at all. Was it too much now that I was on antibiotics again? Would all the ticks in the universe be pulled to me once I stepped into a dance hall? Would this dress bring me more bad luck?

But I knew I couldn't let myself be spooked. I love this dress. I bought it from a local designer at the Eastern Market last Saturday because it would work for both swing and tango, and I had planned to get full use out of it. Plus, last night there was a special teacher, from Buenos Aires, giving a class in exactly what I needed to learn.

I put on the dress, and I told myself that when people asked me how I was doing, I would simply reply "great!" I would say nothing about ticks or Lyme disease or antibiotics. Fake it till you make it.

I stood in class, wearing the dress and my heels, listening to the teacher was explain this special form of partner connection that is popular in Buenos Aires. I felt an insect crawling on my leg. I looked down and saw it was one of those pretty, winged, teeny delicate green bugs whose name I don't know. Definitely not a tick. Still, I was merciless about brushing it off my leg.

Tango requires concentration, enough concentration that it drives all thoughts of illness out of my mind. By the end of class I was no longer thinking about insects or bacteria or bad luck.

After class, I danced for ten minutes and then changed out of my heels to walk home, to get to bed early, because I'm on antibiotics. I was heading out the door when Francisco, who is an excellent dancer, stopped me. How could I have changed out of my dancing shoes already, when he was about to ask me to dance?

This was practically an act of charity on Francisco's part, since he's been dancing for four years and I am a beginner with three months' experience. Meaning it's heavenly for me to dance with him and probably a little annoying for him to dance with me. I rushed to put my shoes back on and we danced the next three songs. And I was happy, truly happy.

YES THIS IS HAPPENING

Last night I was bitten by a tick. I saw the tick in my armpit at 12:30 a.m., while I was taking a shower because I had just gotten home from swing dancing.

That last was in italics because I just want it on the record that as far as tick bites go, I do not tempt fate. There is no hubris when it comes to me and ticks. I do not hike, or camp. I swing dance and tango, and only in urban places. I am 99.9% urban. The closest I get to nature is a couple of flower beds next to a bricked over patio.

I also walk my dog in an urban cemetery, which is wedged up against the city jail, and also close to something that could be called "woods" but certainly doesn't host any deer. And I didn't take Cleo to the cemetery yesterday, the day I got bitten by a tick. I walked Cleo around city blocks. I spent ten minutes with my nephew in his front yard, next to a traffic-filled street. And I went swing dancing in a room with closed windows and not so much as a potted plant in sight.

And there I was, at 12:45 a.m., putting a tick I'd just pulled out of my armpit into a plastic bag. Then taping the plastic bag to the fridge so no one would throw it out by accident before I could overnight it to Igenex labs.

I stopped taking antibiotics for Lyme a couple months ago. Three weeks ago, however, my symptoms started creeping back and I went back on "containment" herbs. I had been trying to get my head around the idea that after six years of treatment, I apparently still have Lyme. Now I'm trying to get my head around how I got bitten by a tick while swing dancing.

Given that I didn't sleep all that much last night, this might not be the most coherent of posts. But here are some thoughts I've been having today:

Yes, truth is stranger than fiction.

If I believed in an all-powerful God, I'd be his sworn enemy now.

Huh?

This is almost too weird for me to be upset about it.

Thank god I have a good doctor (Marty Ross) who has scheduled a phone appointment for me today, although he normally doesn't see patients on Wednesdays.

Yes, I will buy those really cute but comfortable tango shoes I was thinking were an extravagance.

I'm glad I had some left over antibiotics to take at 12:45 a.m.  I'm glad for Igenex labs and overnight Federal Express.

I'm glad my mom was around (as I'm visiting my parents' right now) to be a generally sane presence for me today.

This tick might not even carry Lyme disease or other illnesses. I will know in about a week.

Deep breathing is good for your immune system.

THE WISE MOTHER OF THE CONVALESCENT

Me: I was going to work on my memoir marketing letter, but (grumble grumble) I'm a little tired. I think I'll lie on the couch for half an hour first.

My Mom: Yes! Go lie down! Remember, N., that's is your job right now! Lying on the couch is your top priority.

Thanks, Mom. I couldn't have said it better.

The Convalescent, James Jacques Joseph Tissot 1896

I spent the next 90 minutes on the sofa, getting up just in time to dash off to tango class.

THE CONTRARY CONVALESCENT

The Convalescent, Gwen John 1924

I love this painting by Gwen John, called "The Convalescent." It is so peaceful! It is also a world away from how I've been feeling about my own convalescence, i.e. since I stopped my Lyme medication on April 5th.

According to Merriam Webster Online, convalescence means the 'gradual recovery of health and strength after disease.'

I do not want to have anything to do with gradual.

'Gradual' is in fact the one word in this definition I would like to do away with! I’m OK with taking a nap and getting plenty of sleep. I’m OK with a few leisurely walks, and time spent reading. But I also want to be running with my dog Cleopatra, going dancing four nights a week, and spending several hours a day writing. I don’t just want these things. I’m desperate for them now. If not now, then in a week.

Yesterday I had an appointment with my naturopath, Nesreen Medina. She told me I wasn’t going to get my way. Coming off my Lyme meds and the crazy amount of supportive medicine I was on is a process that will take easily three months.

‘Think of everything you were taking. That’s a big adjustment for your body to make,” she said. “It’s huge!” Meanwhile, Nesreen said, things will feel like a pendulum, swinging back and forth until I find my center.

There’s no way around it. It will take that long for my endocrine and hormonal systems to get their groove back; that long until I see where I land.

Meanwhile, I can count on erratic energy, and more hours than I’d like on the couch. I can count on not making it to every dance class, and not writing as much as I'd like. 

This wasn’t what I wanted to hear, but ultimately it’s good to hear it. It quiets my spinning worries about why I’m not feel better yet. And it means I can come up with some good strategies for getting through the next few months.

Basically, it comes down to patience. Something I need to teach myself over and over. Just when I think I've got the hang of patience, things change up again and I’m smack in the middle of impatience.

 

Patience means accepting reality, and adjusting to what’s going on right now. If there’s one thing I’ve learned at my ripe old age, it's this: once you embrace reality, everything opens up, and change is possible.

 

PATIENCE, PLEASE!

Fourth in the "Getting Off" series

On Friday I stopped taking my antibiotics and the Samento-Banderol-Teasel combination I'd been on to kill Lyme. Dr. Ross even convinced me to put away the home-made nasal spray I've using to treat my sinus symptoms. (see two posts ago.)

I also cut my supplements down to just my multi-vitamin, some anti-yeast pills, and probiotics. Since then I've slept more than I expected (seven and a half to eight and a half hours each night, plus naps) but my energy during the day has been all over the place. Swimming almost always makes me feel better, so I went Sunday. After I was so fatigued that I broke down and took some glutathione and B vitamins. They helped pretty much immediately, but Monday morning I was lethargic again.

This morning (Tuesday) was my appointment with Dr. Ross to discuss the issue of my low hormone levels and borderline low thyroid function. (My mom said she'd sit in on it, and I'd reminded her about it five times.) When the phone rang at 11:30, it wasn't Dr. Ross but his receptionist telling me Dr. Ross hadn't been able to consult with other doctors about my case yet. My appointment is postponed four more days.

Last Friday, I told myself to be prepared for a rocky transition, so why is this so hard? After all, I'm sleeping enough. Some lethargy during the day shouldn't be so bad, but I seem to have run out of patience with having low energy and no answers about it. Is it because I've dropped my anti-inflammatories? Is it yeast? Is it the adrenal support (Isocort) that I've kept taking? It is just my body going through some metamorphosis while it balances my hormones?

Not having a story to tell yourself about what you're feeling is hard. It's now Tuesday afternoon, seventy-two hours to go until my appointment with Dr. Ross.