Fact. It is time. I think the world could be ready. Could be ready for the facts.
The time is right for some hard, cruel bullets. Bullet points.
-Lyme Disease is passed along by tick bites and is found all across the USA and Canada and around the world. It knows no boundaries or borders and respects no laws. It’s an outlaw and the most dangerous type: no one is hunting it.
-Less than half of patients with Lyme remember a tick bite. Again, about 50% get the characteristic ‘rash’ which many doctors perceive as the telltale sign of Lyme. So much for a dead give away.
-The standard test for Lyme Disease that you would get from your regular GP misses 35% of the time to recognize the disease. I was tested and my test came back negative on this test. A ‘screening’ test SHOULD have at least have 95% sensitivity in order to call it such.
-Currently, there are 5 species of Lyme, and over 100 strands in the USA, and 300 worldwide. The number continues to grow rapidly.
-Although your doctor will only generally prescribe 30 days of antibiotics for a conclusive diagnosis of Lyme Disease, never has there been a study proving that 30 days of antibiotics is enough to cure Lyme. It is clear that it does not eradicate the disease and if not treated for more than the 30 days, the relapse rate is upwards of 40%! Long term antibiotics work. It is the only way for me to get better. Long term IV works! It is the way I will get better. Anyone who says otherwise hasn’t been there and clearly hasn’t met people who have.
-For many Lyme patients, the journey to health can take 1-4 years. Relapses occur and more antibiotics might be needed.
-Lyme, like Syphilis, mimics a great number of diseases such as arthritis, MS, ALS, depression, type 2 diabetes, , ADHD, , HIV, rheumatic fever, SLE, Arrythmia, Arthralgias, Autoimmune Diseases, Chronic Fatigue Syndrome, Fibromyalgia, Depression, Parkinson’s, Sleeping Disorders, Alzheimer’s, Irritable Bowel Syndrome, Scleroderma, Peripheral Neuropathy, Bell’s palsy, meningitis and many more. Scary? Some doctors believe that ALS could actually be very late stage Lyme. The final stage actually. Imagine thinking you are dying of ALS and then being told that high dose med’s could have saved you a hell of a lot of suffering. Imagine being in pain and suffering for 20 years and thinking that you just had chronic fatigue or some mystery illness and nothing would change. Imagine how angry you’d be.
I feel like I could write a poem, like little kids do when forced to write about something specific, with the title, “Lyme Disease is…” the way they may have written, “fall is…” or “love is…” or “school is…”. I could put just as much fact and observation in my poem as small children do. I like to just use facts sometimes, you know? Just put away all the personal knowledge and stick with facts, ’cause they hurt less and you don’t have to dig them out of some void and put all the feelings into words. Cause it’s so much easier not to tap into that void and let it fester in the meantime. It’s nicer to think that you don’t have to think about it now. But if you don’t think about it now, it will crop up later and it will have had time to get nasty. And old. And that’s the worst. “Lyme disease is…” well what is it, at least to me?
Lyme disease is waking up in a room you’ve been in for a month and not recognizing it. Lyme disease is not being able to walk 5 steps to brush your teeth. Lyme disease is needing to call someone to fill your water bottle, pick up a pen off the ground, pass you a scarf, help you take off a sweater, feed you. Lyme disease is sitting awake all night with terrifying visions for company. Lyme disease is screaming so loud from pain that nothing comes out. Lyme disease is ending up somewhere and not knowing how you got there. Lyme disease is a pain in your joints that makes it impossible to make a fist, or move fast. Lyme disease is being so confused and angry and scared and in such an impenetrably scary hallucination that you want to rip the IV out of your arm, with no thought of the pain or blood or consequence. Lyme disease is living for the moment because that’s all you’ve got. Lyme disease is blood draws and needles and picc lines and scans and tests and such. Lyme disease is tasting sadness and longing in every mouthful. Lyme disease is chill and fever. Lyme disease is frustration and ignorance and fear. Lyme disease is being dragged across a continent to get help when you have free health care at home. Lyme disease is new and old and complex and deep.
Lyme disease is a disease and is what I have and is not who I am.
Lyme disease is…
Lyme disease is…
Lyme disease is…
Lyme disease is a chance to change and stand up for what is right and not medical dictatorship or it won’t be much longer.
Lyme disease is a time, a place, a feeling, a life, a sorrow, a calling, a chance, and a change.
It is a little world and it calls me home.
News flash: it has been given a final notice.
News flash: it’s been sent packing.
News flash: it’s as good as gone, soon enough.
New flash: Lyme will be evicted from my bones.
natalieOctober 25, 2008 at 7:12 am
Everything you say is true. Reading what you write is painful- but imagining what you are experiencing is even worse.
To me Lyme disease is…
-watching your best friend in pain.
– crying for her when you know her situation is so frustrating.
– unable to do much, besides keeping her to hold on and fight.
– something that strikes deeply every time I hear the word
– something that I am fighting alongside you- even when I am so far away…. the distance is somewhat a problem, but we are dealing with it…
– a problem that “bugs” me enough because it ” bugs” you…
I hope the recovery is coming along- hang in there and do what you need to —
lots of love from nanny <3
RobinOctober 28, 2008 at 7:58 pm
Hang in there Nicole. It will get better. Lauren no longer has hallucinations. She sleeps through the night, goes to school part time, walks every day, no longer has that central line, and can feel her arms and legs all the time. She no longer feels as if centipedes are biting her all over her body. She does still fight the disease every day with antibiotics, supplements and exercise. However, it is much better. You can do it too!! Aloha,Reply