Guest Post: Top Ten Tips to Prevent Chronic Lyme Disease

Co-infections, Lyme Basics, Prevention Tips January 26, 2013 1 Comment

logoteEveryone, everywhere should read these tips from experts at the International Lyme and Associated Diseases Society (ILADS), reproduced here from the ILADS website with permission.  

Chronic Lyme disease patients may face a long hard fight to wellness. People with chronic Lyme can have many debilitating symptoms, including severe fatigue, anxiety, headaches, and joint pain. Without proper treatment, chronic Lyme patients have a poorer quality of life than patients with diabetes or a heart condition.

The fact is Lyme is a complex disease that can be highly difficult to diagnose. Reliable diagnostic tests are not yet available which leaves many—patients and physicians alike—relying on the so called “telltale signs” of Lyme disease: discovery of a tick on the skin, a bull’s eye rash, and possibly joint pain. However, ILADS research indicates that only 50%-60% of patients recall a tick bite; the rash is reported in only 35% to 60% of patients; and joint swelling typically occurs in only 20% to 30% of patients. Given the prevalent use of over the counter anti-inflammatory medications such as Ibuprofen, joint inflammation is often masked.

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Where’s the Anxiety Coming From? A Surprising Answer.

Lyme and the Brain, Lyme Basics, Mental Health, Symptoms: How Do You Feel? January 25, 2013 Leave a comment
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Photo: LifeLoveLyme

This morning when I woke up, I realized that I actually felt refreshed.

I had not endured a night of constant shifting trying to relieve body pain. Or of bolting up eyes wide open at one a.m. and then finding myself stuck awake with raging insomnia for four or five hours. And the thing that struck me most this morning was, I felt at peace.

Lyme disease can affect every part of your body, but many people don’t realize how hard it can hit the brain. For me, one of the biggest symptoms has been crushing anxiety.

I wasn’t particularly surprised; when you’re in constant pain, can’t work, can’t dress or cook or do your own grocery shopping, you lose your sense of self and the worrying escalates. Will I ever feel ok again? Will I ever do the things I used to do, will I be able to work? How am I going to survive financially?

My worrying became debilitating, full-blown anxiety. A therapist helped me deal with it, and medication took the edge off on many tough days.

Here’s a surprise: I had no idea that that the anxiety I struggled with isn’t just triggered by the stress of this chronic illness, but by actual physiological changes in the brain kicked off by Lyme and co-infections.

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Video: Musician Daryl Hall Tells His Lyme Disease Story

Co-infections, Lyme Basics, Recovery: The Picture of Health, Video January 24, 2013 1 Comment

Seems like years since I’ve heard a Hall and Oates song, but this interview on YouTube sure caught my eye. I’m so glad famous people like Daryl are sharing their personal lyme stories.

Notice how his symptoms gradually built up until the day he crashed and couldn’t ignore them any more. If more people knew about how often lyme—”the great imitator”— is mistaken for other things, they could get on the path to good health sooner.

Also take note: he’s recovering – you will, too.

Memory Tip: Pencil It In

Mental Health, Staying Positive January 23, 2013 Leave a comment
It was definitely a bummer seeing all the things crossed out on my kitchen calendar.

It was definitely a bummer seeing all the things crossed out on my kitchen calendar.

I heard an excellent idea from a former Lyme patient who now makes her living helping others manage all the ins-and-outs of this disease. She suggests ditching pens for pencils when it comes to writing down calendar entries.

Because back when she was ill, she started noting social events and appointments in pencil. That way, she says, if she had to cancel something, she could erase it and move on. She didn’t have the stress of seeing her calendar filled with all the thing she crossed off because of Lyme.

That’s an idea we can all use as we move into 2013. In the past few days alone, I have had to miss the funeral of a friend’s mother, pass on my wonderful brother-in-law’s major birthday celebration four hours away in New Jersey, and cancel a reunion lunch with a dear family friend.

At least when I look at my kitchen calendar now, I’m not reminded of all that, and can look to the next week with a fresh outlook.

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5 Ways to Help Others “See” Lyme

Lyme Basics, Mental Health, Tips for Family and Friends January 21, 2013 Comments: 14
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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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One Window at a Time

Activity or Rest?, Mental Health, Staying Positive January 18, 2013 1 Comment
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A job half done is better than not at all. Maybe I’ll get the rest of these wreaths and other holiday decorations put away by February first…

My brother was visiting recently from Manhattan. It seems to me he’s been checking up on me often now that my son has left for college, and I have to say the company is welcome.

One particular day, I was obsessing about all the things undone around the house, including how filthy the windows have become after several years of neglect.

I can’t afford the professional window cleaners I employed when circumstances were different. But I certainly don’t have the energy to wash more than 20  windows myself.

So I was feeling frustrated, angry, and stressed about my lack of energy—and lack of money, too.

Just wash one, my brother said. One a day, and you’ll be done in less than a month.

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5 Tips for Surviving Herxing

Herxing January 15, 2013 Comments: 11
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Photo: LifeLoveLyme

I’m wiped out this afternoon. I started a new antibiotic, and the escalation has begun on all fronts: pain and numbness in my legs; a flu-like, all-over sick feeling; ringing in my ears; and hit-by-a-bus fatigue.

When antibiotics cause herxing and my symptoms ramp up, I turn to some tips that help soothe me so I can get through the day.

  1. Epsom salt baths. I toss 2-3 cups of Epsom salts into a hot bath and soak for at least twenty minutes. The difference can be quite dramatic for me. Note: I did learn the hard way that applying lotion or oil afterwards isn’t a good idea; my pores were open and easily irritated.
  2. Heat. Hot baths and warm clothes are good, and I have several microwavable heating pads that conform to my legs and provide much-needed relief. Heat lamps like those used by acupuncturists feel wonderful on high-pain herx days.
  3. Burbur. This extract made from the leaves of the plant Desmodium molliculum is reputed to promote detox, and many lyme patients, myself included, report that it reduces their herxing. Ask your lyme literate doctor about dosages and whether it is appropriate for you.
  4. Tea with lemon. I’ve heard that lemon is a great detox, so I add it to tea or plain water, and while I’m at it I grate some delicious fresh ginger to reduce inflammation.
  5. Diet. Don’t let feeling awful be an excuse for eating poorly. On herx days, I double my efforts to avoid foods that cause inflammation like gluten and the nightshade vegetables (including tomato, potatoes, and alas my favorite, eggplant). Juicing gives me an added boost of nutrition.

Be sure to let your physician know if your herx is severe. Some experts say herxing can be dangerous, and set back recovery—so backing off on meds or antimicrobial herbs could be important.

See more on the Herxheimer reaction here.

Believing in Lyme When Looks Are Deceiving

Battling Isolation, Lyme Basics, Staying Positive, Tips for Family and Friends January 13, 2013 Comments: 5
Credit: Lyme Chick's Facebook page

Credit: Lyme Chick

“You look great!”

Many days, I wince when someone says that to me. I want to shout in frustration “I FEEL AWFUL!” And when I try to explain, I want to hear “I believe you”—not “But really, you do look great!”

I’ve felt hurt because even those closest to me don’t see my suffering sometimes. But I’m realizing it’s hard for them to believe how awful lyme can be if I don’t clue them in. Especially when it comes to pain. 

Not long ago, my longtime neighborhood book group got together for a potluck dinner. I was just getting to the point in my recovery where I could leave the house occasionally. So I said I’d love to come if I felt okay. Especially because they let me off the hook when it came to cooking a contribution for the table, which I knew I couldn’t manage.

Happily, I made it to the dinner. A few days later someone sent around a photo that included me. By the time I checked my email, a couple of others in the picture had piped up, making jokes about how the picture should have been photo-shopped…the usual chatter of people who hate photos of themselves.

I’m usually one of them. But I opened the file and had to admit I looked, well—great. Yes, great.

The thing is, I felt like hell on the inside.

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Surprised There Aren’t More News Reports About Lyme? Help Get the Word Out

Lyme Basics, Tips for Family and Friends January 10, 2013 Leave a comment
Credit: David Boyle in DC's flickr stream

Credit: David Boyle in DC’s flickr stream

Since learning so much about the horrendous impacts of lyme disease—and living many of them—I am absolutely astonished that I don’t see coverage of this health crisis daily in the news. Lack of information is the reason I got so sick myself.

The few articles I’d seen before I got infected erroneously said lyme is easily treated with a short course of antibiotics, and implied that lyme is no big deal. While this is true for many people, for many others it couldn’t be further from the truth.

I had read that a negative test means you aren’t infected. That’s simply not true; testing is inaccurate. Too bad my health care provider and I didn’t get that information.

Sure, a smattering of articles appear here and there. But not enough. And not enough with a full and accurate picture of this complex illness—and the controversy surrounding it.

Meanwhile,  I’m encountering or hearing about lyme patients every single day now, and just about all of them say they never knew it could be so devastating—or so complex to diagnose and treat—until they got it.

Shouldn’t lyme be covered as often as possible in the media so people can protect themselves? Shouldn’t everyone be alerted so they know how to get a proper diagnosis and treatment if they’ve been infected by a tick? 

Here’s some good news: From my local support group to LymeDisease.org, there’s buzz about a fantastic series of articles on lyme—a series many hope will make it into the Pulitzer Prize spotlight.

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Killing Good Bacteria with the Bad

Co-infections, Healthy Eating, Lyme Basics January 9, 2013 Comments: 4
Do the probiotics I take replace the good bacteria wiped out by antibiotics?

Do the probiotics I take replace the good bacteria wiped out by antibiotics?

I’m pretty tired of that perky Jamie Lee Curtis and her “Activia” ads on television. Yeah, I’ll admit it, maybe I’m just jealous that she looks so damned good at her age, while I feel my own looks sliding into oblivion as the years slide by.

But I’ll admit she delivers an important message in those yogurt ads—good bacteria promote digestive health. And I’ve learned they do much more.

A riveting article by Michael Specter titled “Germs are Us” in the October 12 (2012) New Yorker magazine addresses this question: “Bacteria make us sick. Do they also keep us alive?”

Specter reports that “…the destruction of bacteria may contribute to Crohn’s disease, obesity, asthma, and many other chronic illnesses.”

As if I didn’t have enough to worry about with threatening bacteria like Borrelia burgdorferi and Babesia microti roving my body and making me sick, I’m quite concerned that antibiotic treatment is killing too many good guys among the tens of thousands of bacteria species in my body. Continue reading →