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!

NEW SERIES: GAME CHANGERS. POST #1

I've been slacking in the medical tips department, but I'm resolved to do better! My plan is to be more systematic, writing about one medication per post.

We all remember Miracle Max,
from The Princess Bride.
He was right, miracles take time.

This series is about what works for me. (This is basically a re-branding of posts with that tag. You can find these very practical posts in the word cloud to the left.) I wish I could say I've found the low-cost, one-single-pill, covered-by-insurance cure for Chronic Lyme. That is not so. Some of these things will be covered by insurance, others not. In addition, what works for me is a multi-step process throughout the day.

And yet, I've been reminded recently that my life is now unbelievably good compared to what it used to be. I've come to this point after years of trial and error, and with input from several good doctors. 


I wish, for the sake of everyone reading this, that things were simpler, medication-wise. But the human body is complex, illness is complex, and medicine is therefore complex. Stay strong, Lymies!

(And remember, medical researchers are working hard. Find more on that front at lymedisease.org.)







So here's the subject of this post:

I take this every morning, right before I get out of bed, and again at approx 12:30 /1 pm. This is to support my adrenal glands, which do not function well due to damage from Lyme. (For the record, I’m not advertising for Thorne Adrenal Cortex. It happens to be the brand I take but another brand would probably work just as well.)

Low adrenal function was the first clear medical diagnosis I got on the road to recovery. This was in the year 2001, a couple of years after I’d been knocked down by something mysterious, an illness that showed up on exactly zero medical tests. It would still be many years before my Lyme diagnosis in 2007. So the adrenal diagnosis was all I had for the interim. It was the first scrap of evidence that it was not all in my head, as so many doctors had been telling me. It was a small clue, but an important one.

The adrenal glands are glands located on top of the kidneys. They are, as a doctor once told me, the spark plugs of your body. They produce cortisone and cortisol, which are crucial biochemicals in the endocrine system.

Over the years, I've tried many things to support my adrenal glands, hydrocortisone, the pharmaceutical usually prescribed for adrenal insufficiency. (Prescribed an endocrinologist, in my case.)

The prescription hydrocortisone did very little for me. Likewise, other natural supplements touted to help the adrenals did not help me. Again, this is my individual, personal experience. I have no preference or belief about natural vs. allopathic medicine. I only care about what works. This type of naturopathic adrenal cortex was a game changer. It has made all the difference in my life.

It was the difference between being able to get up and walk, or not. When I started on adrenal cortex, it was many years after the diagnosis of low adrenal function. By then I was seeing a doctor who had figured out my blood was too thick and put me on blood thinners, which allowed me to be a little more active, enough to be able to walk about three blocks. That seemed like a giant break-through, but it was still impossible to build up my strength beyond that. At that time I was on hydrocortisone.

Once I stopped the hydrocortisone and switched to adrenal cortex, in a matter of days I was able walk eight blocks and build from that, walking further and more quickly as the months went by.

I made the shift to adrenal cortex in 2007, not long before I started my antibiotics for Lyme. It was in combination with the antibiotics, blood thinners, and quite a few other supplements, that I got my physical strength back. Like I said, things are complex.

This supplement is not vegan, or even vegetarian. Thorne Adrenal Cortex is taken from bovine adrenal glands.

I guess this makes me part cow.

Adrenal cortex a medicine. Yes, you can buy it over the counter, but I repeat, it is a medicine. It treats a real medical condition. Your endocrine system is a complicated and delicately balanced network! Meaning, don’t do this on your own at home, kids!

A doctor can run a test for adrenal function if you are experiencing severe fatigue. Please, go to a doctor for help with this. It is A-Okay to be a pro-active patient who brings suggestions to your doctor, especially suggestions from other patients who are posting about them because they work. Be polite, be concise, but ask. A good doctor will be open to your suggestions.

An Additional Note on Fatigue: 

I get very frustrated with the word fatigue. For me, fatigue meant feeling all day long like my body was made out of some impossibly heavy substance, along the lines of concrete mixed with lead, making it all but impossible to stand up or move around. 

Walking to the end of the block and back (which I stubbornly did from time to time) left me aching all over and unable to function for days and days.

If this sounds like what you’re going through, and you’ve been told you have Chronic Fatigue Syndrome, please consider that CFS is not a very useful diagnosis, or truly a diagnosis at all. Consider that you might have Lyme or another infectious disease, even if you've had a test for Lyme. The standard test for Lyme most internists will give you is wildly inaccurate. Check with an LLMD.

Have hope. I am now running five miles a few times a week, and (as readers of the blog know) spending a lot of time dancing. And getting around Seattle by bike. Things get better if you stick with your medication.

DAY TRIP

Young Hare by Albrech Durer

My short story, published by Hunger Mountain, is now online. It's called "Day Trip." 

 And it's also reviewed on the ploughshares website.

THE EXUBERANT STAYCATION

June, 2017. Is it OK to have fun on this blog? This a post entirely about an orange dancing-girl costume.

Home-made headdresses, past and present.

Here in Seattle, I tend to hold fast to my daily routine, even on weekends. Feeling good means being faithful to what keeps my symptoms in check, and that allows me to do as much as possible in the place where I live. Yes, as has been noted before on the blog, travel is difficult, except for car camping. And yet, can I complain? I live a full, rich life.

But this week, I’m declaring a vacation. It’s that beautiful, dance-filled time of year. When May and June roll around, my samba group is all about preparing for the wonderful, goofball, homespun Fremont Solstice Parade. 

The parade is about homegrown creativity, and it's very much a neighborhood tradition. Over the years, I’ve seen some amazing art in motion on the streets of my neighborhood. I’ve also had moments at the parade, when I’ve looked around and it’s all been so goofy that I’ve thought—really, we’re doing this?—but then it seems half the city has crammed the sidewalks to watch. It's one of my favorite days of the year, and the preparation is half the fun.

People make amazing art for my neighborhood parade.
June is time to go all out!

My classic tomato pin cushion, a gift from my sister-in-law.
Other dancers glue their costumes with a glue-gun, but the fumes
make me sick, so I make mine the old-fashioned way, by sewing.

For my dance group, preparing means making costumes, and extra hours learning choreography. It can come down the wire, and people often stay up late to get things done. But since I can’t skip sleep... well, I’ve decided to do something radical and give up writing for a few days. Usually I hate anything that stops me from writing. Nonetheless, with a few days to go, I’m taking time off to get my costume done. I am declaring a vacation!

Our group did color blocks this year. I was in the red/orange block.
These are my "raw materials": red bra, rolls of feathers.
I bought red dance shorts, too. 

To make my headdress I started by wrapping a frame from floral/millinery wire.
See below for how the frame looked on my head. (Held in place with strap!)

One more shot of the frame. I'm ready for communications
from the space aliens!

But actually, not that interested in talking to E.T.s, so I sewed on feathers.
(Selfie in the bathroom mirror.)

The costume making continues....

My outdoor workspace later in the week. 

The corset top in progress. I cut up an orange
dress I found at the thrift store. Added some gold adornment.

Sewing the corset top of the dress onto the red bra, including cutting down
the back dress straps to fit, and sewing on hooks. Plus some more gold.

Almost ready...

Secret ingredient. Yes, all the gold on my outfit is gold duct tape. 

JUNE 17, 2017:

Headdress, wings, plus orange dress transformed into dancing-girl costume.

Out with friends...

Photos by Raul Campoverde

Orange is the new orange.

This is Ashley, next to me in the parade and she's totally upstaging me
(and rightly so), but stop looking at her for a second! Look to the right of the photo.
 Yup, that's me, from the back. (Nice gold sunbursts!)
And Marian is behind me, in magenta. So much fun!

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/