Tag Archives: chronic fatigue

What Does Chronic Fatigue Mean, Really?

 

 

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Because I’m not merely “tired” when Lyme  gets me in it’s grip, I’m far beyond that. Tired is what happens to well people who overdo. It’s what happens to heroines in Victorian novels who faint on chaises.

Isn’t there a better pronouncement for what happens to people with chronic illness—sometimes even when we do nothing at all?

In my opinion, “chronic fatigue” is so overused it has no meaning.  Continue reading

10 Things I Wish I’d Known About Lyme Disease

IV treatment. Pills. More pills. I can't believe I made it through all that. When it could have been avoided...

That’s the little portable pump for my IV drugs. Then there were the pills. More pills. Harsh meds that made me sicker so I could get better. I can’t believe I made it through all that. When it could have been avoided…

 

 

It’s 2016, and I’m finally climbing out of the Lyme hell I fell into blindly four-and-a-half years ago. If only I’d known more, sooner.

Maybe I can help someone, somewhere, by offering a few things I was shocked to learn. Frankly, it is damned hard to pick just 10 things. But here goes:  Continue reading

O Canada

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I’m always a little stunned when I track this blog and am reminded that people from all over the world visit. So many of us are on the lookout for information.

Today I’m thinking about Canadians because lots of my traffic at the moment is coming from my neighbors to the north, who’ve been checking out my post from several years ago on how Lyme was affecting my brain at the time.  Looks like some of you are sharing the link on Facebook. Thank you!

Like others around the globe, many Canadians are having a tough time getting good treatment. Health officials just don’t get it (sound familiar?).

The nonprofit Canadian Lyme Disease Foundation says:  Continue reading

Video: Pathologist Alan MacDonald Addresses Important Lyme Questions

If you’re like me, you want to know the latest scoop on what scientists are learning about Lyme disease. In this May 2013 interview we hear again from pathologist Alan MacDonald. (This interview is part 2 of a 3-part series, see the first one here). I’ve noted some key points you can jump to if you don’t have time to view the entire interview.

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Burning Feet

I’m pretty sure most people around the world who aren’t living with Lyme think the symptom list is this simple and straightforward:

  • bull’s-eye rash
  • flu-like symptoms

And I reckon that this false belief is a major reason persistent Lyme disease continues to be missed in people with a wide range of complaints physical, cognitive, and emotional.

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Juicing Up My Diet

Can you eat all this lush veggie wonderfulness in one sitting? Photo by LifeLoveLyme

Can you eat all this lush veggie wonderfulness in one sitting?
Photo by LifeLoveLyme

Carrots, celery, brocoli, a hearty portion of kale, parsley, an apple and a big red beet: so much nutrition! A couple of day’s worth of vibrant vitamins, right?

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5 Ways to Help Others “See” Lyme

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Actually, I’ve learned many people need a little help from me to truly see the pain.

Lyme is known as an “invisible” disease. That’s because oftentimes we look pretty good on the outside despite feeling myriad symptoms inside. And—unfortunately—many of us are darned good at keeping those symptoms invisible.

My own reasons include:

  • I don’t want those around me to worry.
  • Pride.
  • I don’t want people to know how sick I really am because I’m afraid they’ll abandon me.
  • I hate the thought of becoming that depressing person who is constantly complaining about how crummy he or she feels.

But I’ve come to see that a dose of reality is a good thing. When people understand the seriousness of this illness, they offer empathy and support.

Beyond that, we need others to know how serious chronic Lyme can become, so more people understand diagnosis and prevention—and stay well.

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Boost Your Health with this Superfood: Kefir

I let my kefir sit long enough to get creamy, but sourness does increase with time.

I let my kefir sit long enough to get creamy; sourness increases with time.

I’d never heard of kefir until my wise and wonderful acupuncturist encouraged me to try it as part of my recovery regimen for Lyme disease. Explaining that the fermented drink has many benefits and would boost my struggling immune system, he pressed a small packet of the starter culture into my hand to take with me.

I read up on this ancient superfood, and discovered its rich history over many centuries. Legend has it that long ago, shepherds in the Caucausus Mountains discovered that milk they carried in leather pouches fermented into tasty kefir as they rambled with their sheep.

Another story says that kefir was a gift to Orthodox Christians in the region from Mohammed, who warned them it would lost its miraculous health benefits if they shared it. People held it close, but kefir inevitably began to spread as its value came to light.

The people of the Caucausus are famous for being long-lived; maybe I could enjoy some of the same benefits. Kefir is loaded with vitamins, calcium, and fiber along with health-promoting bacteria. The National Kefir Association says this drink typically contains three times the probiotics of yogurt.

Studies show that kefir can “stimulate the immune system, enhance lactose digestion, and inhibit tumors, fungi and pathogens— including the bacteria that cause most ulcers.” Who knows, maybe research will show kefir goes after the lyme bacteria Borrelia burgdorferi, too.

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Video: Did You Know Ticks Can Transmit Lots of Infections—Like Babesiosis?

I’m very lucky to have wonderful neighbors. One of them, Marilyn, called me the other day to say she’d seen this segment of “Monsters Inside Me” on Discovery’s Animal Planet. It explores the case of a Lyme patient who was not recovering, and her doctor’s discovery that she had babesia caused by the parasite Babesia microti. Marilyn knows I’m being treated for Lyme and wanted to make sure I knew about this co-infection. She got the message: Lyme patients with babesia need treatment for that along with Lyme in order to recover. I’m also lucky to have a Lyme literate doctor who checked me for co-infections at the start because I had soaking night sweats, a key symptom; my treatment is going well. Babesia can also cause the spleen to rupture; read one patient’s story here. The good news is, babesia can be treated. But first it has to be diagnosed. Please, share this video to help get the word out. And if you want lots more information on babesia symptoms and treatment, see this video by Dr. Robert Horowitz of the Hudson Valley Healing Arts Center in New York. 

Running on Empty

Credit: Taylor a’s Flickr stream

I did it again just the other day. I ran out of gas.

I accepted an invitation to meet my friends Susan and Eva for lunch in Maryland 25 miles away from my Virginia home, even though I already had a doctor’s appointment on my calendar for that morning.

I climbed into my car and drove thirty miles to my appointment. Then I got back in the car and, instead of going home, I drove to the restaurant. And then I ran out of gas.

Meaning that I hit the wall physically. And this keeps happening to me because I can’t get it through my head that lyme means you never have the energy you wish you had. You want to do things you’d normally do, but wishing doesn’t make it so.

I’m learning to think of my energy like the gas in my car.  At this point in my treatment, I would say I have about 1/8 of a tank. Continue reading