Lyme: In Our Own Words

Want to know what it’s like to have a Tick-Borne Illness that affects the body in different ways everyday, with no timeline of when there will be an end to the pain? Here are some quotes from those who suffer from Lyme and other Tick-Borne Illnesses. I hope this helps others to understand the nature of this deadly disease.

Lyme Disease: In their own words…

“Lyme disease has taught me how to be a soldier and move forward, for my family and I regardless of my pain and fatigue.” –Nicole

“What do you do when you are in chronic physical pain? It never lets up and continues every second of your day. It is like it sucks your very soul out of your body and you start to lose yourself. There is no longer an option to be strong. You just want to survive. You want to understand what’s making your body hurt so bad. What do you do? Physical pain disrupts your emotions, your will, your motivation, your inner peace, your everything.”  –Angel

“I ventured to one game of my sons tonight. It was very hard, as being outside bothers me more. I just looked straight ahead and didn’t move my head. No one talks to me anymore, which I couldn’t do anyway. I know they just don’t know what to say, even though I have known them for 5 years. I was extremely dizzy and the world was spinning. I had no idea what was going on, but I figure, at least I’m trying. I pray and hope to get out of the wheel chair someday and walk.” –Rachel, Missouri

“I want to get things done and push and push myself and then when I don’t get it all done I get so frustrated with myself.” –Melody, Virginia

“I wake each morning trembling with pain. After an hour of waiting for pain meds to kick in, I make it to the bathroom. I venture to the kitchen to make coffee. My room is pitch black or so it seems. My eyes are closed and remain that way nearly 80% of the day. My son, who is five, doesn’t know I am really sick. He says I’m boring. I take him to the park, snap a couple pictures and close my eyes. He drags me out of bed every 5 min to look at this and look at that. I have learned to just lay in his bed. To him, I am the best. He tells people I got smashed in the army. I have abandoned all aspersions of truly making it out of this bed.” –Lyme sufferer, Illinois

“I lost my car, job, health, vibrancy, and beautiful hair along with my nerves, peaceful sleep, sense of purpose and muscle tone. I am scared. I have been treating it for a year and am still incredibly messed up. I only had it for 2 1/2 years before proper diagnosis, some people have it much worse than I do. I can’t imagine their scare. I, Lara, vow to get well. I vow to participate in my treatment, even if it means enduring temporary physical, emotional, and mental changes in my life. I vow to stick with this course of treatments and not look back. I vow to do everything in my power to heal and to live.” –Lara, Houston

It is time for the voices of the Lyme community to be heard. We will not go silently. Our lives are on the line. I will not stop advocating for this terrible disease until the CDC, ISDA and insurance companies have changed their policies, so that people fighting Lyme Disease can have a chance for wellness. Prevent. Educate. Advocate.

 

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Products to Protect and Prevent!

Here are some great products that can help you keep the blood suckers off of you this spring and summer!

I have a friend who swears by “Baby Legs” for her little girls when they are outside and she even wears them! They are leg warmers made with Insect Shield technology – built-in bug repellent that’s safe for the whole family! These are a fun way to keep buggies at bay! I have an order in for a few pairs for my girls. They have some for boys, too! I’m excited that the insect repellant that is in these is not harmful to the skin because it’s on the fabric – not something you spray or rub into your child’s skin. The coolest part about this product is that the insect repellant stays on the leggings for 70 washings!!!! You can order some here: Baby Legs

Insect Shield also makes clothing for adults who work primarily outdoors, but they also have basics like long-sleeved shirts, pants and jackets. I’m thinking I should buy a shirt or two! Insect Shield Clothes

I really love this idea for pets. It’s a tag for your pets collar that repels fleas and ticks without chemicals and it lasts for 4 months!

Shoo Tags

I will post more as I find them. Hope this helps you and your family keep the ticks from getting you!

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Did You Know? #10

Lyme disease is a “great imitator” and should be considered in the diagnosis of MS, ALS, seizure and other neurological conditions, as well as arthritis, CFS, Gulf War syndrome, ADHD, hypochondriasis, fibromyalgia, somatization disorder, autism, orthostatic hypotension, encephalitis, meningitis and patients with various difficult-to-diagnose multi-system syndromes. (source: www.tbdalliance.org)

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Did You Know? #8

There has never in the history of this illness been one study that proves even in the simplest way that 30 days of antibiotic treatment cures Lyme or tick-borne diseases. However, there is a plethora of documentation in US and European medical literature demonstrating that short courses of antibiotic treatment fail to eradicate the Lyme spirochete and other tick-borne bacteria.  (source: www.tbdalliance.org)

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Did You Know?#6

Fewer than half of patients with Lyme disease recall any rash. Although the bullseye red rash is considered the classic sign to look for, it is not even the most common dermatologic manifestation of early Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the Erythema Migrans rash is a clear, unequivocal sign of Lyme disease and requires no further verification prior to starting six weeks of antibiotic therapy. Shorter treatment courses have resulted in upwards of a 40% relapse rate. (source: www.tbdalliance.org)

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Did You Know? #4

Ticks do not know geographic boundaries. A person’s county of residence does not accurately reflect their risk, since people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure for every individual.

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