10 Things You Need to Know About Lyme Disease…

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10 Things You Need to Know About Lyme Disease

It’s everywhere

Tick borne diseases have been found in every state, every country, and every continent – except Antarctica. Ticks travel so it makes perfect sense that Lyme is not only in one place. Ticks also hitch rides on birds, small animals, etc. and can move geographically this way, as well.

Children are at the highest risk

Children suffer the most from Lyme and co-infections because they are typically more active outdoors and the symptoms can be mistaken for other illnesses. Children go years suffering the devastating consequences as the disease gets worse over time, so they miss out on their childhood before getting an accurate diagnosis. The hardest hit age group is age 5-14.

It’s commonly misdiagnosed

Many tick borne disease researchers and doctors are finding that their patients that have MS, ALS, early on-set Alzheimer’s, Lupus and many other auto immune and incurable diseases are positive for Lyme. Some recent research done with post-mortem ALS and Alzheimer’s sufferers revealed the borrelia (Lyme) bacteria was in their brains and other areas of the body. People around the world are discovering that what they thought was MS and ALS was actually Lyme and their symptoms are alleviated with long term antibiotics.

It feels like you’re dying

One person can have up to 50 painful symptoms that cycle on a weekly basis because of the systemic and cyclical nature of the bacterial disease. The bacteria is spiral shaped and screws in the joints and muscles causing joint pain, migraines, nerve damage, paralysis, eye problems, insomnia and many other symptoms that cause debilitating problems. When the bacteria reproduce and are “active” in the body, it causes flare ups of symptoms that can cause new symptoms or ones that come and go at different times causing a terribly long and frustrating journey to get an accurate diagnosis. Doctors often dismiss Lyme patients as hypochondriacs because of the many “dramatic” complaints of rotating symptoms that “come and go.”

You might not get that “bulls eye” rash

More than 40% of tick borne disease sufferers never had a rash and by the time they were diagnosed it was too late to treat their disease easily. Doctors usually won’t give antibiotics unless you have the rash, but you could still be infected if you were bitten by an infected tick.

Current testing is terribly flawed

This makes diagnosis almost impossible. The current tests most primary care doctors will give for Lyme disease only tests for one particular strain of Lyme and there are over a hundred strains, not to mention the many other tick borne diseases in which testing is not available. The current Lyme blood test only tests for antibodies, not the Lyme bacteria and Lyme supresses the immune system, causing the body to not create antibodies for Lyme. This is very problematic, because if you have Lyme you could test false negative even if you are positive.

Lyme and co-infections can be chronic

Those who seek treatment quickly for tick borne disease have a good chance of recovery but left untreated, it can be a life-long, grueling and costly chronic disease.

If caught late, tick borne diseases can be debilitating and even fatal

Many tick borne diseases can cause great damage to the brain, nervous system, neurological functions and the heart. Lyme carditis can cause heart arrhythmia, palpitations and heart attack.

Tick borne diseases can be sexually transmitted

Entire families suffer from Lyme disease and co-infections that have possibly been passed from husband to wife, (sexually transmitted) and from mother to child, (in utero). The bacteria is very similar in shape and type to the bacteria that causes syphilis, so this could be a reason that it is possible.

Awareness and education is the key to prevention

Do tick checks often – even if you have only been in your back yard. Ticks are everywhere – not just out in the woods. Use DEET and other insect repellent, but also dress for the activity. If you are camping, wear long socks tucked into pants so that ticks can’t crawl under your clothing. Check your pets after walking them so that they aren’t bringing ticks into the house. Talk about it. Let others know how dangerous ticks can be! Spread awareness!

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Disease Quantified

My doctor looks at the stacks of paperwork in front of him. His silver glasses slide down his nose and he uses one finger to push them back into place. He has just finished my daughters lengthy Lyme appointment and now she is in the next room with my husband getting poked and prodded – another appointment, another round of tests, another day spent using our energy and resources to fight this battle. Dollar signs mount in my head as he gathers up her files and places them neatly to the side, grabbing mine from underneath. He pulls each page of my medical history out of the folder like he’s dissecting something living. He lays the specimen on the table in front of him and examines all of my insides in written form.

I have a feeling he’s had a long day even though it’s only 1pm. His answers have been short and to the point. He barely glances at me as he runs down my list of symptoms and asks stoically, “Since you were here last, how would you say you are doing?” He is looking for a percentage. We’ve been through this more times than I care to remember. My first visit almost 4 years ago was a big fat 20% and that was just because I was breathing and I had made the almost 2 hour drive, so I figured I couldn’t say zero.

I know this question is coming and yet, I can never seem to answer it. Every 6 month visit, I sit in this same stupid chair, mute and blank. I sit in silence for what feels like an eternity. Just me, a nurse with her back to me typing notes, and my LLMD. I stammer mindlessly, but I can’t answer the question. I have wondered why this particular question out of the many that are asked at my appointment is so difficult for me to answer and I think it comes down to this: my health cannot be quantified into a number. I don’t know how to do that. I understand that it’s just to give my doctor a rough idea of how I’m feeling, but this disease is so mysterious. It’s always changing. There is not a good answer. Case in point: if he had asked me that same question this week, I would have said 30%. I think I’m in the middle of a relapse…I’m not sure, but something is brewing and it has hit me hard. The day before I was fine. Today, worse. 70% 30% 40% Then what?

How do you quantify days of pain, of sickness and fatigue, even one day of life with this disease? I find it quite impossible because it never stays the same. Disease doesn’t have a solid foundation. Bacteria travels. Some days the meds help, some days they do not. Remission is temporary. Relapse happens. Pain is cyclical. I push myself and make things even worse. It’s an endless loop of chronic… everything.

So, how do I feel today? About 70% better than I was four years ago or perhaps, with a shift in perspective… 30% of the person I was before Lyme took over. It’s all in how you look at it. When I think about it, my current “70%” probably isn’t the same as it would have been before I had Lyme. My standard of living has changed with a chronic illness. It goes back to “how do you quantify disease?” I don’t have the answer.

It doesn’t really matter, because they are just numbers after all. My daughter and I are much more than a number and this disease is much more complicated than a percent sign. I hope one day I can sit in that office and not have any hesitation before I can say I feel 80% better than the last time I was here. Maybe I will even get to 90.

The problem is that it’s in that pause where the fear of  the future lies dormant but restless. It’s the continual worry that treatment didn’t work or the memory of a day not long ago that was agony, or the thought of those tremors that haven’t gone away, or the constant panic that is in the background of everything wondering if tomorrow is the day it will all go right back downhill again. So the pause – that quiet hesitation – means I am running through all of these things in my head and as much as I want to be optimistic, I know the reality of this disease.

But, they are only numbers in the end and if numbers can help propel this disease out of my life, then I will do all that it takes. So, I lift my head up and I deduce the disease to a percentage point. “70%,” I say, as he continues to examine the ink blotted specimens.

I don’t know what to do with you anymore

the uninvited guest who comes and goes

feeding off of my body 

eating away the best parts of me

I thought I got rid of you once

but not without a price 

you took so many years

leaching onto my unborn child 

you sleazed your way through her beautiful veins 

making her feel the weight of your ache

but we fought back 

pills, ports, and protocols

moments of childhood stolen 

and I just wanted you to know 

our health is

non-negotiable 

you are not welcome here

cammie_drC

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