Monday, July 13, 2015


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.

Sunday, June 7, 2015


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.


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.


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?)


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.)


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!

Friday, April 24, 2015


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.