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!