Dancing with Fireflies

Thoughts on life, Lyme, and more

Archive for the category “Living with Lyme”

The Lyme Monsters vs Who I am

When I was younger, before I was diagnosed with Lyme disease I was losing a battle with the Lyme Monster in a war I had no idea I was fighting.  Lyme is evil, there is no other word for it but evil. Because it’s not just a disease of one area, you never know what’s actually happening to you or why. When I was in my 20′s I was losing the battle. Lyme comes with a range of psychiatric reactions too. Some  experiences including paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder are common with Lyme disease.  Studies have 26% to 66% of Chronic Lyme patients suffering from depression.

As my body grew weaker with the disease, my heart and soul did as well. I was going through a really hard time in my personal life, trying to be a single mother and grow up at the same time. I didn’t have any friends to turn to and I felt like there were times I really just wanted to give up and sleep forever.  I look back now and just want to hug 23-year-old Me and tell her what was wrong and how someday soon it would get better and she would have answers.

One of the favorite attacks the Lyme Monster used against me was attacking my adrenal system and hormones. Not only was I having a hard time moving around, remembering things, keeping my emotions in check, and staying awake.. but my body began to put on weight as well. My self-esteem just took a massive blow. After the birth of my third child I watched in horror as weight gathered in places and refused to budge no matter how much I watched my diet and tried to work out. The pain of working my muscles at the gym would last for days and ache deep and hot. Exhaustion after going to the gym was mind numbing and all I wanted was to sleep so I didn’t hurt anymore.  And like anyone else, after putting myself through so much pain daily and feeling so run down, I pulled away from the gym too.

Lyme is a sick bastard, it tears at your self-esteem, your personality, and your body. I had to learn how to fight on a different level.  I am always fighting it. I know that when I give in, even for a day, I will feel worse for much longer.

I know I am not alone in my fight against Lyme. Robert C. Bransfield, MD found in his study of Lyme disease that depression is the most common psychiatric syndrome associated with late stage Lyme dis­ease, like I have. Although depression is common in any chronic illness, it is more preva­lent with Lyme patients. There appears to be multiple causes, including a num­ber of psychological and physical fac­tors.

From a psychological standpoint, many Lyme patients are psychologically overwhelmed by the large multitude of symptoms associated with this disease. Most medical conditions primarily affect only one part of the body, or only one organ system. As a result, patients singularly afflicted can do activities which allow them to take a vacation from their dis­ease. In contrast, multi-system diseases such as Lyme, depression, chronic Lyme disease can penetrate into multiple as­pects of a person’s life. It is difficult to escape for periodic recovery. In many cases, this results in a vi­cious cycle of disappointment, grief; chronic stress, and demoralization.

It should be noted that depression is not only caused by psychological factors. Physical dysfunction can directly cause depression. Endo­crine disorders such as hypothyroidism, which cause depression, are sometimes associated with Lyme disease and further strengthen the link be­tween Lyme disease and depression.

Suicide is the weapon that Lyme uses to finish us off. Sadly suicidal tendencies occur in approxi­mately 1/3 of Lyme encephalopathy patients. Few of us are ever free of the thought of helping out the disease and sleeping forever.

The Jarish-Herxheimer reaction is hell and it’s a hell we will go through for the rest of our lives. When in treatment, the Lyme fights back and it wants you to think you are dying and even worse.. it wants you to help it take you down. Some patients have described becoming suddenly aggressive without warning. For me, antibiotic doses have to be increased very gradually or else suicidal thoughts and depression swim in my head constantly and I beg for help.  I’ve felt as if the antibiotics were actually killing me with each dose and would beg my husband not to make me take another dose.

But please, don’t think that Lyme will always win.  Medications are out there to help with this part of your disease as they helped with mine. After suffering from terrible tremors and body vibrations, my doctor suggested a low dose of Sertraline daily to help settle the nerves in my body and keep my system from going into a hormonal panic attack. It works, really.  I have more energy and strength to keep fighting.  And I am not going to let it take me down, nor help it win. 

I am not my Lyme.  I am a beautiful strong artistic woman who loves her children and husband dearly, enough to keep fighting through the pain. 

Please, if you have these thoughts and need someone to talk to.  I am here and there are others who are waiting to help you too.

 

 

Lyme check-up day

About twice a year I see my doctor to talk about the progression of my Chronic Lyme disease. I love my doctor, he’s easy to talk to and doesn’t scare me with talk about how my disease will continue.  He’s usually very positive and makes me feel like he’s pleased with how things are going.

Today was no different, the usual weight, BP, ect.  I was a little more annoyed at seeing the scale, frustrated with knowing I keep myself pretty restricted and try not to go crazy with food, yet I never see any change in weight. I’ve been a little more tired than usual, my joints have been pretty swollen and it is easier now to feel the pain settle in. But after my doctor went through the usual questions he assured me that it’s just the Lyme that’s making my exhaustion flare up and it would hopefully settle down once I got more sunshine.

There are days when I wish that I could just have a common cold and I knew it would be over in a few days.  Thankfully he seemed to think that I didn’t seem to be getting worse and I was on a good path.  We did a lot of blood work to make sure everything is working properly.  Not sure why, but blood days always seem to take the life out of me and my arm aches for days.

I know I am luck though that I have a great family, lots of support, and that I haven’t gotten to the ugly stage yet.

~ C. ~

Chronic Fatigue and Lyme Disease study

Check out this article!

March 26th, 2011; Vol.179 #7

    Tired, sure, but is it from Lyme disease or chronic fatigue?
A scan of spinal fluid proteins reveals distinct signatures for two conditions
    By Nathan Seppa

MOLECULAR TELLTALESProteins in the spinal fluid may help diagnosis. This diagram depicts proteins found in three groups: people who have been treated for Lyme disease, chronic fatigue syndrome patients and healthy volunteers. While 1,605 proteins show up in all three groups (gray), 738 other proteins show up only in people with chronic fatigue syndrome (red) and 692 proteins crop up only in people in the Lyme group (green).

Proteins found in the spinal fluid may serve as biomarkers to help doctors cut through the clutter of symptoms that show up in two groups of patients — those with chronic fatigue syndrome and others with lingering effects from Lyme disease. Different sets of proteins discovered in the two groups indicate these are distinct and distinguishable disorders and that both involve the central nervous system, researchers report in the February PLoS One.

“This provides strong evidence of a biological component” in these conditions, says study coauthor Steven Schutzer, a physician and immunologist at the University of Medicine and Dentistry of New Jersey, in Newark. “There are abnormalities in the spinal fluid, which is really a liquid window on the brain.” But he cautions that the findings represent a first step in seeking biomarkers for the conditions and don’t reveal whether these different protein signatures cause the syndromes or result from them.

Chronic fatigue is a baffling condition marked by prolonged and severe tiredness that isn’t resolved by rest. Its cause is unknown and is often difficult to diagnose and treat. Women are most commonly affected.

Lyme disease results from infection by Borrelia burgdorferi, a bacterium spread by deer ticks. It is treatable with antibiotics, but infections can go unnoticed, delaying treatment. Also, despite clearing the bacterial infection, some patients continue to have longer-term symptoms, including fatigue. Scientists have wondered whether such post-treatment Lyme problems are a form of chronic fatigue, but a connection has never been ascertained.

In the new study, Schutzer and his colleagues analyzed spinal fluid samples from three groups — 11 healthy people, 43 diagnosed with chronic fatigue syndrome and 25 previously treated for Lyme disease but who were still experiencing cognitive problems and fatigue.

Analysis of the fluid samples detected more than 2,600 proteins in each group. Most of the proteins appeared in all three groups. But 692 proteins turned up only in the Lyme patients and 738 others showed up only in the chronic fatigue group.

Some of the condition-specific proteins may ultimately serve as biomarkers, Schutzer says. Identifying 20 or 30 proteins that show up consistently in a condition — but not in healthy people — could form the basis of a diagnostic test for the ailment.

“I think this a great first step,” says Joseph Breen, a biochemist at the National Institute of Allergy and Infectious Diseases in Bethesda, Md. “What’s exciting is that it looks like they’ve been able to tease out differences” between groups of people with these conditions. This finding will need to be validated in more spinal fluid samples from greater numbers of people who have these conditions, he says. A test using blood samples would be even better, since blood is more easily obtained, Breen says.

The new data also provide leads for other researchers to investigate, such as discerning functional roles of proteins that show up in only one condition. This could shed light on the molecular biomechanisms underpinning symptoms seen in patients, Schutzer says.

Just how it is.

Windbeeches on the Schauinsland in Germany (Bl...

Image via Wikipedia

The weather has turned cold and rainy, days of sun and warmth are slowing down.  I know the cold weather is coming, I can feel it in my aches and pains. It’s going to be a long winter.  Thankfully I know to be prepared.

Yesterday I found my heating pad and took some time with my feet up after my physical therapy appointment. I have to say, my chiropractor has actually helped me keep my Lyme symptoms down.  Whenever I am feeling tight or aches start to get me down, she’s been so great at being able to soothe the pain and move fluid around so that the inflammation places in my joins and muscles settle down.

But the cold doesn’t help.  As much as I’d like to get out and walk more.  I know that soon after the swelling and pain will settle in and plan to stay for a while. A lot of Chronic Lyme disease patients have issues with temperature.  Sometimes the Lyme doesn’t react well to the extreme heat.  As I know, when I do heat therapy I see an almost instant reaction.  I feel sick, worn out, and the Lyme has a odd reaction.  The same thing happens with extreme cold.  My body just aches and I lose circulation to exposed fingers and my toes just turn blue.

However, I am ready.  I have my every day gloves all ready, my heating pad is working nicely, and I am stocked up with my coffee.  I’ll also go get a massage with heat and hopefully get the pain to move a bit.

So bring it on, I am ready!

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