Bloody Lymey

A Blog About Living with Lyme Disease

Groundhog Day and How a Good Attitude Helps Lyme Days

Remember that movie? The one with Bill Murray?

Every morning he woke up to the strains of Sonny & Cher caterwauling “I Got You, Babe.” It was 6AM. It was Groundhog Day. Again.

Each day he encountered the same people, the same places, the same situations. Each day he reacted differently and had a different attitude. Some days he actually killed himself, only to wake up – inescapably – the “following” morning to Sonny & Cher. A daily blizzard prevented him from leaving this Pennsylvania hamlet.

I hadn’t seen the movie since it came out. And I was a much different person – pre-Lyme, pre-Alcoholics Anonymous. This year we watched it on Groundhog Day, and I saw it with new eyes.

An annoying ex-classmate came dashing toward the Bill Murray character. “Phil? Phillll? Philllll!” The man cried in an irritating voice. One day Bill Murray ran away from him. One day he punched his lights out. Another day he hugged him [not out of love, but simply to mess with him]. Another day he was decent to him. And so on. Each day played out like this, different attitudes and different approaches.

We can only live our days once. Some days I wake up feeling mediocre and I dwell on how the mediocrity sucks. Other days I wake up in horrendous pain but can maintain a decent attitude. Other days I wake up feeling fine and I feel invigorated and upbeat …..

It’s hard to control my mood when I’m feeling sick. But with a little work, any day can be a “good day.” And considering where I was before I was treated, I’m in a way better place – even if it hurts sometimes. Even if I can’t function as well as usual. But my attitude makes all the difference. Does having Lyme disease suck? Yeah, sometimes. If I have the “why me’s,” then I should wonder “why not me? Why should someone else go through this?” Today my attitude isn’t the best. My knees are killing me and I had a long meeting at work out of town today so I spent the day sitting. The lack of mobility makes my aches a little worse sometimes. Am I prone to the ‘blame game’ today? A little bit. I’m fighting it. I guess I wrote this blog to remember how my attitude dictates what kind of a day I had. I know that my body can sometimes feel like a prison, but my soul doesn’t have to be another cage or another strand of razor sharp barbed wire.

Is the glass half empty or is it half full? Honestly, it’s always full. You can’t always see air, but it’s there filling up the other half.

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Lyme Support Group Berkshire County, Western Massachusetts

Here’s the newsletter I got –

I haven’t been to any of their meetings yet, but they have been going on for some time now. They must be pretty good! I hope to get out to one soon. It’s fairly accessible to Eastern New York and Southern Vermont. It may be a stretch, but Northern Connecticut, too. Lyme Disease is a pretty lonely illness – there’s support if you need it. I know there are other groups out near Springfield, MA as well – Longmeadow area. Here’s info on the Berkshires one:

The monthly Lyme Disease support group hosted by the Lyme Alliance of the Berkshires is set to meet this month and has also scheduled meetings for March and April.

Adams Free Library
92 Park Street
Adams, MA 01220

6 to 7:30 pm

Next Meeting: Tuesday, February 28th, 2012

Upcoming Meetings: March 15th, 2012 & April 19th, 2012

I look forward to seeing you there.

Sincerely,
Kenneth

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As Much As I Can Chew …

Since September, I have been working about 50 hours/week between my day job and my internship. I moved. I MOVED! Am I insane? I don’t know what I would do without my boyfriend and his help.

There is a stress test one can take where you rack up points for each thing you have experienced in one year:

http://www.cliving.org/lifestresstestscore.htm

I had a score of 329 just for the past year. The stress test says to reflect on the past “year or two.” With the exception of Christmas, I think everything I racked up points transpired in the past 6 months – from the hostile work environment and being fired to my recent move and change in job responsibilities, etc.

With these changes have come some changes in my symptoms. I had a 2-week period where it felt like embers were jumping in my feet (the pain was quite stunning – it’s amazing the ways in which my own body can torture me from within). There was an episode of incontinence; I had actually just used the bathroom and was in the parking lot at school when it happened. I felt it start to happen and couldn’t stop it. If you’ve ever had to use the bathroom at a college, you know it can be a mercilessly long walk at times. Thankfully I was headed home and it wasn’t too much. My vision is inconsistent (sometimes I’m terribly near-sighted) and there is pressure in my head. Not a headache. Just pressure. I had a big lapse in health insurance and could not see anyone for it. I had to cancel an appointment with my LD Specialist.

I know …. I KNOW …. if I had kept the appointment, she would quip, “What tipped the apple cart?” She asks this when symptoms increase in severity and, of course, she refers to stress.

Most of the changes I checked off in the “life stress test” were positive changes. The job. Moving. Moving in with my boyfriend. School. But, they are changes nonetheless. I am a newbie in countless arenas.

I have to remember I haven’t bitten off more than I can chew. I have bitten off about as much as I can chew. Thankfully the house is pretty settled and thankfully I have a month and a day to go before the internship ends.

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Reiki & Lyme ….

I have an old friend from high school who has started a Reiki business. To keep up to snuff and to build something of a client base and gather references, he charged me $5 to have a Reiki session.

Going there, I didn’t expect very much. I thought at the very least I would feel relaxed – soft music & laying down and being still for a while.

He explained I might feel tingling or heat in certain chakra zones. I smiled politely and nodded.

My only prior experience with “energy shifting” was when I had acupuncture to treat my lyme. I remembered liking it and I remembered my symptoms easing, but I really expected to be far better off at the end. I probably needed more treatments or more mental clarity to go with it.

Way before this, I had “reiki.” I had befriended an Asian lady who seemed to be searching for who she was. One night, she was a loud-mouthed party girl (heckling a standup comic and pounding back beers). Another day, she seemed to want to be a wise practitioner of Eastern Medicine with words of wisdom and Confucious quotes. She made strange noises like she was attempting to “hock a loogey” and waved her hands around me. I felt nothing but brewing nausea.

I had no idea. NONE.

In the course of it, I felt like I was wearing a tight and tingly helmet when he did what he did to my head.

Due to a past trauma of sorts, I bug OUT when people touch my throat. He mentioned it before hand and I was prepared, but I did feel tense when he touched my throat – and it wasn’t in a threatening or confining way, very gentle. However, I let myself be open minded and I kept reminding myself to take down the “wall” I was instinctively putting up.

When he told me to turn over, I was so deeply relaxed that my body felt heavy. I flopped back down on the reiki table and chuckled about it. Turning over, I succumbed to more relaxation.

I foolishly tried to get right up when it was over, but still felt floppy.

When I left, I felt at once content and energized. I can’t remember the last time I felt this limber. I can’t remember the last time that I didn’t think the ladies’ room at a concert was “far away” as my legs and fatigue joined forces to rebel against every step.

Last night I saw a concert at Tanglewood. I had to walk up a stoney path – perhaps an 8th of a mile? And I did it. I walked quickly and with purpose like I did a long while ago.

I am enjoying mental clarity. I came home and started cleaning my house – fairly quickly – intuitively knowing where things belonged.

During my last flare-up, I couldn’t clean. I could force myself to do the dishes and maintain the bathroom – anything that might potentially make the house stinky or unsanitary. I couldn’t – could NOT – contend with the clutter or the “picking up” piece.

Even after the flare-up, I couldn’t pick up very well. I would stare at it, confused, seeing “stuff.” I didn’t have the mental capacity to see the forest for the trees. It was just forest without any distinction of elms or maples or firs. Just STUFF.

Now that mental clarity is back. I feel put back together.

It’s lasting, too! My treatment was two days ago and it hasn’t wavered any bit.

I plan to go again. I can’t believe my good fortune. I don’t know what the secret is or how it works, but I know keeping the “wall” down is important. I found myself mentally resisting it at times and I’d have to remember to relax and keep an open mind.

I don’t know what makes one person a good practitioner over another. I can’t advise anyone how to choose one. If you’re in the Berkshires, message me and I’ll recommend this fabulous and legitimate guy.

If you’re struggling with lyme disease and you have an open mind, it might be worth pursuing this.

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Being Good to Me….

I’ve been feeling just well enough to treat myself better.

Last night, I cooked myself a bangin’ good dinner – veggie quesadillas (sauteed summer squash, zucchini, peppers & onions with pepper jack cheese, guacamole & sour cream). It was sensational. For months, I’ve been wanting a “home-cooked meal” (that I made myself). I’m glad I felt good enough for this to come to fruition.

I am cleaning my house a bit, providing myself with a better environment. I’ve kept it clean-clean, but it’s been cluttered. The best I’ve been able to do is keep the bathroom cleanish and do the dishes so the place doesn’t smell.

I’m trying to find a good balance between knowing my limits and doing what I’m supposed to. Sometimes I have to stop and ask myself if I’m really not feeling up to snuff or if I’m just not used to doing things. I’ve ruled out laziness. My head races when I’m feeling okay and I want to achieve EVERYTHING. I want the house to be perfectly clean, every errand to be run, a nice cooked meal with everything cleaned up after …. I want to bring my son out of town and do something fun and … and…. and! I have to remember Rome wasn’t built in a day.

I just feel like I have so much living to do and so many unchecked responsibilities.

I’m getting there.

I’m hoping for a day when I can do normal things and take it for granted again. I’m hoping for a day when I don’t have to do things because “I’m feeling good today and need to seize the opportunity.” I’m hoping for a day when there’s more good days than bad. I’ve had those days before. I know I’ll have them again.

Is it too much to hope for that those days will last into old age?

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Plans

With lyme disease, it’s hard to make plans. Summer’s here and the time is right for …. amusement parks, water parks, daytrips, boat rides, and all kinds of great things.

I wanted to take my son on a whale watch this summer. The ocean is roughly three hours from here. If I wake up feeling good, there is no telling how I will feel when it’s time to come home. Can I drive all that way?

I can’t plan on going to an amusement park. That’s not something you can do spur of the moment and there’s no telling how my legs will feel or how my knees will feel or how I will feel.

It’s a fairly beautiful summer so far and I feel like the best I can do is sit in the sun. My boyfriend and his convertible helped me get a tan. All I have to do is sit there with the sun on my face and the wind in my hair. What a difference that has made.

Until there’s an upsurge in my health, I have to appreciate the little things. Having a coffee in the shade in my backyard with a friend. Having a convertible ride. Sitting by the lake and watching my son have fun.

I’m adapting again. It’s okay. I’m very lucky.

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Herx Reaction & Lyme Treatment

You’re feeling BAD. Sore knees, nerve pain, headaches, fatigue, muscle weakness, dizziness, malaise …. all of it. You can hardly move.

Then you’re TREATED for it! With dull optimism, you gimp into the pharmacy and get the ‘script. You get home and take one. The next day, you take another, then later you take another …..And … you feel worse. You didn’t think it was possible, but your body hit rock bottom and grabbed a shovel and kept digging.

So you want to stop the antibiotics. You want to stop whatever protocol you’re on. Don’t you? Of course you do.

*** And if you’re on antibiotics, it might be wise to ensure this is not an allergic reaction. If your symptoms are out of control, then go to the ER to make sure this isn’t serious. ****

And if it’s not an allergy… then ….

What is happening is a GOOD thing. That extra pain. That comatose-caliber exhaustion. That inflammation. That weakness. That “wanna curl up into a ball and DIE” feeling. It’s called the Jarisch- Herxheimer Reaction, and sometimes simply the Herxheimer Reaction, shortened to the peppier nickname “Herx.”

Lyme is caused by a spirochetal bacteria. Another such bacteria is syphillis. In the 1800’s, two separate dermatologists noted syphillis patients getting worse before they got better. The bacteria releases toxins and the human body can’t detoxify quickly enough, hence an autoimmune response, hence lots of pain (inflammation) and exhaustion.

The bacteria that causes lyme disease can mask their own antigens and our immune systems don’t always detect it. Once it does detect it, the inflammation starts and the pain and fatigue start because the immune system has been alerted and is now fighting the infection. The bacteria then alters its antigens and is disguised again.

The Herx reaction may be worsened when the bacteria reproduce – there are growth spurts every 3-4 weeks (sometimes 6 weeks). A long course of treatment may result in several Herx reactions, and may be spread out during the replication.

It is also important to continue treatment before, during and after the Herx reaction (and not everyone gets them, particularly if the disease hasn’t progressed far enough and the patient isn’t as inundated with spirochetes). Many people have lyme relapses because they don’t finish their antibiotics. Many more may have chronic lyme disease because of not finishing their protocols.

I know there have been times I’ve taken breaks from my antibiotics. I just went off the salt protocol because my Herx reaction was overwhelming.

How long a Herx reaction lasts seems to follow with how long you’ve been sick, how sick you are, how ingrained the bacteria is in you, etc. It can last for a few hours, a few days or a few weeks [gulp].

There are things we can do to get through the Herx Reaction:

1. WATER , water, water – I’m guilty as HELL of not drinking enough. I love diet soda. I love coffee. Water just makes me pee and it seems like it doesn’t sustain the moisture in my mouth the way carbonated things do. But this is the key in EVERY article I’ve read and in EVERY person I’ve spoken to about the subject. If you do nothing else, do this. And make sure it’s 2-3 quarts/day during treatment.

2. Epsom Salts – toss this in a bath. The bath will make you feel better, even if marginally, and the salts will help extract toxins from your skin

3. Milk Thistle – this is a supplement that supports liver function

4. Peppermint Oil – this is reputed to quel nausea and to help with headaches. Sniffing it helps.

5. Peppermint Tea – see above

6. Nattokinnase – a supplement that is reputed to help cleanse the blood (*Note – it’s made with soy. Don’t take it if you’re allergic*)

7. Vegetables – dark, leafy greens are supposed to be the best and most antimicrobial

8. Fruits – makes your liver’s job easier than eating junk food and lots of chemicals

9. Cut back on sugar – mehhhh. They say that Borrelia burgdorferi LOVE feasting on sugar … hmmmm. I don’t even want to think I make them happy.

10. Cut back on caffeine – MEHHHH! I don’t want to. They say that they get what we get and this makes them more active. It may also aggravate some of the symptoms. Mehhhhhh! Who can cut back on caffeine when they’re exhausted?! I guess if the pain is great enough, I will.

11. Benadryl – they say this is good if you get a rash. I’ve read it can be helpful even if you don’t have a rash! However, if you’re prone to feeling tired on Benadryl then you might find it exasperates the symptoms of the Herx Reaction

12. Alka Seltzer Gold – they say this can bring more alkaline to your blood and may be beneficial

Armed with this new information I’ve researched (and relayed to you), I’m going to try the salt and vitamin c protocol again!

*** By all means, stick to your treatment. Follow medical advice. Don’t stop doing something if it’s clearly working! Loved ones are going to HATE seeing you doing badly. They are going to wring their hands in despair and they are going to want to FIX this for you. They might recommend you stop treatment. Keep your eye on the ball. Remember they are good intentioned. Also remember that there is a deplorable infection in your body and it’s dying. Keep doing what you’re doing. Have a funeral for the little varmints. Do something funny. Visualize their die-off. Revel in it. ***

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Just Say No

I’ve recently and unexpectedly found myself unemployed.

You’re probably thinking this is a great time to heal myself, a time to rest up, send out my resume to people, lay on the couch and get caught up on movies, sit in the sun and read …..

Yes. It’s summer. These DO sound like awesome ideas, don’t they? I will be 40 in November and have NEVER been unemployed in adulthood. I’ve worked since I was 17.

This end to my service with the company is (frankly) a big relief. My stress was wiped out in one fell swoop. I’d rather worry about money than ethics.

So this is good! Emotional respite. Physical rest. More time to concentrate on getting a job – which I was doing anyway, but didn’t have the time to devote to the endeavor like I wanted.

No.

Not at all.

I’m actually busier! My house is messier! I’m here less!

So I have to figure out a way to advocate for myself. I need to recharge my battery. I can’t go into a new job needing sick time.

My knees were feeling the clouds, pregnant with raindrops, and I pushed myself. I did lots of stairs. I did lots of laundry. I did lots of pacing and standing and walking and ….. I kept telling myself “just one last thing ….”

And I spent the rest of the day laid-up and exhausted.

That benefitted me how?

I have to lay down the law.

I think people who need help and need favors find it easier to ask people who are unemployed. Then we have trouble justifying why we can’t. I mean …. “today’s my day off,” right?

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There’s Nothing Wrong With You

From the medical community to lay people, this is the mantra that lyme patients become accustomed to.

I’ve even heard it from other lyme patients! I know a man who was nearly killed by lyme – or it would be wiser to say that stubbornness nearly killed him. He had an incredible fever and lost his wits. After being urged to go to the hospital and politely declining, the decision was made for him and he went via ambulance.

“You’re just used to being sick,” he said off-handedly when I told him my symptoms had come back.

After nearly 9 months of primo health, how could I be “used” to being sick?

A man I met in Las Vegas last year spoke of an infection he had, and we exchanged stories. When he heard the duration of my illness, he remarked, “You’re just getting used to it in the same way prisoners become institutionalized.”

I assure you that being “sick” is something a person never can fully get used to. That’s what gives us the drive to beat it.

Doctors mimimalize it. They would prefer to diagnose you with something more mysterious like chronic fatigue.

I once heard a doctor say “if everyone in Berkshire County was tested, they would be positive. You have to develop a natural tolerance to it.”

Yes. A doctor. In a labcoat, with a stethoscope, and the letters “MD” on the license plate of his shiny Mercedes.

So, there’s nothing wrong with me. That means there’s SOMETHING wrong with me for even supposing there is.

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