Thursday, August 20, 2015

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 4th 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.



Monday, July 13, 2015

GREAT PODCAST ABOUT LYME. THANKS, DIANE!

Diane Rehm has been great about covering Lyme disease, and getting the full story out there about diagnosis and treatment. In this show she does have a doctor on there who says there's no such thing as Chronic Lyme (makes my blood boil) but she also has a couple doctors on there giving the opposite POV--that is to say, the POV that corresponds to the experience of so many Lyme patients out there!
Let your friends and family know about this podcast.
Also, regarding the Lyme/tick/mouse cycle mentioned on the program, my family has been using Daminix tick tubes to help stop it.http://www.ticktubes.com/index.html

Sunday, June 7, 2015

ADVENTURES in HERBAL TREATMENT FOR LYME


I’ve received requests from readers for more updates on the combination of Lyme-killing herbs I take, and I’ve finally gotten around to it. This going to be a spare-no-details-nitty-gritty medical post, so non-Lymies, you might want to look away!

Dipsacus Sylvestris, or teasel, one of the herbs I take
19th century illustration, anonymous



BACKGROUND (skippable if you’ve read the blog before)

I spent eight years of my adult life (age 26-34) scarcely able to stand up or walk, or read or write, due to an illness doctors could not diagnose, and which many people told me was all in my head. Once Dr. Marty Ross diagnosed me with Lyme, I took antibiotics for the better part of five years, and they brought about a miraculous change for me. Heavy-duty antibiotics got me up on my feet, walking for miles, then running for miles, and learning swing and Afro-Brazilian dance. Most importantly, I was able to read and write again.

Writing again does not mean charging around foreign cities working as a journalist, which was my job before I got sick. I work at home, writing short stories and this blog, taking little naps, and following a strict diet and a complicated medical routine, because I still have Lyme.

So the miracle of the antibiotics was not a 100% cure, but to it’s best not to get nit-picky about miracles. From bed-ridden to running five miles is still a miracle, even if, confusingly, you can’t get through the day without a nap.

Five years on antibiotics was enough, however. In 2013, I decided to stop pharmaceuticals and shift to herbs.


THE REASON FOR TAKING HERBS

Before I started this particular combination of herbs, called the Samento Banderol Protocol, my treatment approach had been ‘War on Lyme’: fight as hard as I can now (no matter what the side effects of antibiotics), in exchange for feeling better down the road. This was the right decision at the time.

Years and years of a full-scale war inside your body, no matter how miraculous, ends up wearing down your soul. When I decided to switch to the Samento-Banderol protocol, I was not expecting to get stronger or reduce my lingering Lyme symptoms. I was essentially calling a truce. A truce meant ceding a certain amount of territory to the enemy. I was willing to give borrelia  burgdorferi (aka the Lyme bacteria) 30-40% of my time/energy/mental space, in exchange for having the rest of my life for myself. To extend the war metaphor, I would need some serious border patrol to keep my enemy on its side of the line. That’s where the herbs came in. Medicinal herbs = border patrol.


WHAT I LOVE ABOUT SAMENTO-BANDEROL

The first thing I love: there are scientists researching this herbal combination. In lab experiments, Samento-Banderol compares favorably to antibiotics, especially on one of the big Lyme issues, biofilms. Thank you, Dr. Eva Sapi, for spearheading this research and breaking new ground on Lyme and biofilms. You are one of my heroes!


The second thing I love about Samento-Banderol: It works. The past year in particular, I have been feeling really good, albeit by ‘I-still-have-Lyme’ standards. The progress I’ve made while taking the herbs is not a giant change, but it’s noticeable. To my surprise, I’m finding I’m more energetic and have more mental clarity than a couple years ago. I’m sleeping better, running further, getting to dance class more consistently and hence dancing better, which makes me so very happy. (Have I mentioned before, in this blog and elsewhere, how happy dancing makes people?)


MY MODIFICATIONS TO THE PROTOCOL

First modification:

The herbs Samento and Banderol come in tinctures (made by Nutramedix and readily available on Amazon, but not at many other places). When Dr. Marty Ross started me on the protocol, he prescribed two doses per day, of 10 drops each of the herbs, working my way up to 25 drops each. I took a dose at bedtime and it helped me sleep through the night. I took a dose after breakfast and it helped me go back to sleep after breakfast, something I was not planning on. In fact, it knocked me out for rest of the morning.

This was not the aim of taking herbs! I had enough of having half my day wiped out when I was on antibiotics. I switched the second dose to after lunch (nap time) and the rest of the day was shot. What to do? 

I’ve never been one for following rules if they don’t make sense, so I tried scaling back the nap-time dose, while increasing the bedtime dose. This gave me more productive daytime hours, and I was sleeping better at night. Finally I scaled the nap time dose down so much I was taking one drop, and then I thought, why bother? I gave up on taking the daytime dose and packed everything into one giant hit at night. (I ran this change by Dr. Ross and he said it was fine.)

FUTHER MODIFICATIONS

The herbs in question, hanging out with some fresh mint in my kitchen


My personal protocol, which has evolved over a couple of years, should really be called the Samento-Banderol-Teasel-Pau D-Arco protocol. I’ve added these last two herbs in at the suggestion of my naturopath, Nesreen Medina. They have greatly reduced some additional symptoms.

The herbs (like antibiotics) are more effective when rotated. Cumanda is another herb I rotate in, often dropping out Banderol.

For those who aren’t on blood thinners: I found taking these herbs in conjunction with blood thinners is important. (I’m on Heparin and Lumbrokinase.) At least according to my schematic understanding of Eva Sapi’s research, these herbs and Chronic Lyme are all about biofilms, which are the biological chain mail borrelia burgdorferi weaves around itself. Blood thinners assist in breaking down and clearing out biofilms.

Stay tuned. More on my implementation of the Samento-Banderol protocol soon!