Friday, May 1, 2009

LIVING INSIDE THE BOX



At my appointment with Dr. Martin Ross last week I asked him if Lyme disease was causing the ongoing Achilles tendonitis that has brought my dancing to a halt and curtailed most of my other physical activity. "Absolutely," he said, explaining that Lyme causes inflammation, which often effects tendons as much as it does joints.

So here it was again-- Lyme, my most intimate relationship, so invisible, so close, my old friend and my greatest enemy. Knowing for sure that Lyme was the cause of my latest problem shifted my perspective. It was an explanation at last for what as seemed so very strange to me. In January the pain in my heels came out of nowhere, for no apparent reason, and in the months since I have found no easy treatment for it. I've made small gains with physical therapy, but progress has been slow and frustrating. If the problem is Lyme than it is deeper than I thought, but there are also more ways to treat it.


For the past two years I have been beating Lyme with determination, patience, a bit of intelligence and (unfortunately) lots of cash. Recovering from Lyme has been the first priority in my life, not out of choice, but out of recognition that there was no other way. For the last six month, however, I'd been trapped in a real estate venture that often forced Lyme into onto the back burner. There was no way to say that the tendonitis was a direct result of that, but now was the time to redouble my efforts.

Thinking I was on familiar territory, I started the week with a plan to get the upper hand on Lyme and tendonitis:

1) Add plaquenil to my medical regime as Dr. Ross had suggested
2) Add a high dose of turmeric to my supplements, to control inflammation
3) Get a bike so I could exercise outside without having to aggravate my tendonitis by walking up hills
4) Stretch, stretch, stretch

Each day I checked an item off my list, feeling satisfied. It was all about keeping focused. On Saturday I filled my plaquenil subscription, on Sunday I made up my own capsules of organic turmeric bought at the co-op. I had fewer side effects on the plaquenil than I expected, and by Tuesday my energy was even improved, apparently thanks to the plaquenil. On Wednesay morning I walked to the neighborhood bike store for a helmet. When I mentioned I was riding again for the first time in years, I got into a conversation with the mechanic about Lyme disease and how I was recovering from it. As I joyously mounted my clunker craigslist bike on Wednesday afternoon, I thought I had it all figured out.

By Wednesday night my heels and lower calves were hurting again. It seems my brilliant solution to exercise—to ride a real bike, outside—had set me back again. Just a little, but enough to give me pause.

My legs and lungs and heart are longing for long, hard exercise, the kind that would get my blood pumping and make me feel high from the joy of motion, the kind that would have me sleeping deeply at night and leave me a little stronger, week by week. I long, in fact, for the kind of exercise I was doing in January before the tendonitis started. I have to hand it to Lyme—it is a clever adversary. Just as I was turning that corner where my body could at last get stronger of its own accord, Lyme has managed, in turn, to hobble me again.

And there is nothing to do but accept that.

On Sunday, as I packed capsules full of turmeric, I imagined writing a blog post about will power. Instead I am writing this one, about limitations. Now it seems apparent it is not the power of my will that matters, but its flexibility. It's the same game I have played for years: recognizing my limits and working within them, and finding the happiness to be had there.

For the foreseeable future I can't go dancing, or for long, hilly walks, or ride a bike outside. There are other ways to enjoy being outside, however (like writing a blog entry while sitting in the garden, for example), and other ways to enjoy being in my body. After all, two years ago I was living with much greater physical hardship than this. Once I’d remembered that and accepted that riding an exercise bike was the best thing for me for now, I enjoyed my stationary bike ride at the gym more than I had before.

9 comments:

Spinhirne said...
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Anonymous said...

How did the tendonitis work out? I think I might be going through something similar. I had Lyme years ago and I get problems from time to time.

Naomi said...

Hi There!

In the end I found a good physical therapist, and more importantly, a massage therapist who is an expert in myofascial release. Over time, the tendonitis improved, and I could exercise freely again. Now that I am off antibiotics and doing a final detox of all the Lyme and fungal toxins that had built up in my system, I'm finding the tendonitis is scarcely bothering me at all.


Hope that helps! If you need more info, let me know.

Naomi

May said...

Hi Naomi, I have the same tendinitis. I took an antibiotic treatment, but it wasn't that long. It was for 40 days. I had Lyme for five years, I don't know if this tendinitis means that I haven't get rid of the bacteria yet. I feel much better now, I was like you lock in my house and feeling terrible. Can you please send me more information about your treatment and who was your doctor? Thank you for your help.

Naomi said...

Hi May! My doctor is Marty Ross, in Seattle, and also the naturopath Amy Derksen. I think they are easy to find on the web. The tedonitis is caused by inflammation, which forms adhesions in your muscles if it stays in your body for too long. The muscles aren't flexible enough and they pull too much on the tendons. Lyme causes the excess of inflammation! My antibiotic treatment for Lyme lasted 4 years, but I had Lyme for 10 years before I got treatment. I am not a doctor but from everything I've heard from other patients and doctors, 40 days of antibiotics might not be enough if you've had Lyme for so long. I think it is worth consulting a specialist in Lyme. Feel free to ask any more questions and good luck!

Anonymous said...

Thanks for your post. I too suffer from tendonitis, only in my elbow, which flares up terribly each time I rotate my antibiotics for Lyme, which I do once a month. It does suck. I appreciate your blog about trying to look on the bright side. It helps to know I'm not the only one.

I am almost at the end of my first year on antibiotics. My Dr also says it will be 2-3 years but perhaps it will be 4 as in your case. I too have had it in my system for 10 years since the initial tic bite in 2001 when the Dr's gave me 2 weeks of antibiotics and said I'd be fine. Ha!

Naomi said...

Sounds like your flare-up when you rotate antibiotics is part of your herx, which is a good thing! Right now I am trying to get myself herxing as much as possible, hoping this will get rid of that last, entrenched bit that keeps coming back. I felt awful yesterday I had to keep telling myself that was good! Ha!

(If you havne't read it already, "Cure Unknown" by Pamela Weintraub gave me lots of good insights into Lyme treatment.)

I hope you power through your own treatment and get well again. Ten years is a long time!

Thanks for your comment,

Naomi

James Cuthbert said...

Hi Naomi, I've had Lyme for many years and only had it diagnosed two weeks ago. One of my many symptoms was achilles heel of my right ankle. After two weeks of antibiotics the heel seems to be feeling a bit better (as are my symptoms apart from my neck and head). I only hope that when I come off antibiotics in another two weeks time my syptoms don't come back! During my years with Lyme I've managed to keep working and getting some exercise. Like you, I long to get a big rucksack on my back and go into the mountains for a good walk. Good luck Naomi.

James.

Naomi said...

Hi James!

I am glad you have your Lyme diagnosis at last. In the end, lots of myofascial release massage, along with anti-inflammatory measures, took care of my tendonitis. I've learned to massage my calves myself, which keeps expenses down.

I hope your recovery from Lyme is swift! Just FYI, lots of people with Lyme need more than a month of antibiotics, and there are good doctors out there if you need them. Here's one site you can keep on the back burner: http://lymedisease.org/resources/referrals.html

Good luck!

Naomi