personal journey with lyme disease

ABCs of Lyme (N-Z) November 7, 2017

Filed under: Late Stage Lyme Disease — iammorethanlyme @ 3:57 pm
Tags: , ,

N is for my Naturopathic doctor.  She considers the whole person – body, mind, spirit and emotions – to promote optimal health.  She uses traditional and alternative therapies to treat my Lyme disease and co-infections.  She is amazing!

O is for Opioids.  JUST SAY NO, please.  The Opioid Crisis scares me.  I know pain well.  I know all too well the pain of Lyme and co-infections.  I know the pain involved in treating Lyme and co-infections.  My first Lyme doctor said he didn’t like prescribing pain meds as it would mask too many things; new symptoms, herx pain and improvement.  I agreed and still do even when I had to have part of my jaw bone chiseled out, when bone pain wakes me and when I broke my ankle this summer.  I choose heat, ice, massage, Reiki, exercise, the chiropractor and the occasional Tylenol or Motrin.

P is for Penicillin injections.  The original antibiotic still works well in the treatment of Lyme.  The shots are not fun, but I’ve had worse…

Q is for Quiet.  I just want my brain to be quiet.  I want spoons not to clang in coffee mugs, dishes to be silent when being stacked, alarms not to sound like alarms, phones to ring silently and people not to look at me so loudly.

R is for Rifampin.  One of the few antibiotics to cross the blood/barrier brain and also one of the nastiest to land in your body.  IV Rifampin works beautifully as it bypasses your gut (oral Rifampin wreaks havoc on your GI track).  The herxing has no description, well, maybe like Hell.  It cleared my brain fog, the inability to understand simple instructions, comprehension issues, eye problems and the head pain.  The fact that there was suddenly a shortage of IV Rifampin supports all the conspiracy theorists that believe the Government doesn’t want us to get better.  It is a cheap, inexpensive drug that works.  This is not the first drug for Lyme treatment that has had a sudden “shortage.”

S is for Steroids.  Another huge NO! to steroids.  They are like “crack” to spirochetes.  I spiraled out of control when I was put on steroids for my herniated disks and was unaware that I had Lyme.  These little bastards multiplied so fast that I was having trouble with coordination in less than a week’s time.  That was in 2004 and it wasn’t until 2008 that Lyme was confirmed.

T is for The Spoon Theory ( yeah, I cheated there, but both S words are important).  If you are not familiar with it, here is one of many links: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.  I also found another link by someone who found and explained the flaw in the original article: https://themighty.com/2016/05/why-the-spoon-theory-doesnt-fit-my-life/.  Read them, share them.

U is for Ugly.  Diseases aren’t known for being pretty, but Lyme and co-infections take ugly to a whole other level.  Hair loss, rashes, cysts, lesions, stretch marks, weight loss, weight gain, tooth loss, fungi, parasites, vomiting, diarrhea, tics, tremors, seizures, strokes, burns, bruises, cuts and broken bones (from balance issues and brain fog), scars from: ports, IV lines, gall bladder removal and appendectomies just to name a few.

V is for Validation.  Even after all this time, I need validation.  I still love to hear my hubby tell me I look like crap because then I know I am not imagining how bad I feel.  Lab values out of control? Super!  Another validation of why I feel so sick.  Medication kicking my ass?  Wow, I really am herxing so that means I am really sick.  I am also thrilled to get validation for a delicious dinner, for a good work out at the gym or for a blog I wrote (hint, hint).

W is for Water.  Seriously, you need to drink at least half your body weight in water each day to flush out toxins.  There are more methods for detox, but if you can only afford water, reap it’s benefits!  Soak in it with some Epsom salts, baking soda and Apple Cider Vinegar.  Do a foot bath with the same ingredients.  Drink, drink, drink.

X is for Xerostomia.  Dry mouth.  What?  I needed an X word and with all the meds and supplements we take, lots of us have dry mouth.  Biotene makes an oral rinse for dry mouth and, Thank God, it works.  Have dry lips?  That’s Xerochilia 🙂

Y is for You.  You are amazing, strong, resilient, intelligent and deserve to be treated with compassion and respect.

Z is for Zigzag.  That is how we navigate Lyme; you zig, the spirochetes zag.  We are all affected differently and we all respond to different treatment plans.  We are all striving to be well.  Be careful not to lecture on traditional versus holistic treatments.  Do not shame another person with Lyme for doing things you would not.  Lyme and co-infections respond based on cycles, die off and the weather.  That means we do, too.  There is no cure, so we are all left to our own devices to choose a path that allows us to feel alive.






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