personal journey with lyme disease

ABCs of Lyme (N-Z) November 7, 2017

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






Friday, July 10, 2015 – A New Beginning July 13, 2015

Filed under: Uncategorized — iammorethanlyme @ 2:41 pm
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My Friday morning started out the same as always: get up, shower, get dressed, have coffee, check emails, have more coffee, do a few puzzles and pay bills.  The rest of the day was unique to me.

I left the house at 9:15 to go to the bank and then make it to an appointment 40 minutes away.  After my appointment, I headed through the back roads of Wellesley, MA to Needham, MA to a gluten-free bakery and picked out two gluten-free and two regular cupcakes.  Then I wound my way to Rt.1 South and got an iced coffee at the drive-thru window.  I continued down Rt 1 to Newbury Comics where I found a CD Dave has been looking for and a used DVD “Office Space”.  It was close to 1 o’clock and I was hungry so I had one more stop at the Canton Library to pick up the next two books in a series I am reading and then I headed home where I ate and sat for a few minutes deciding whether or not I needed a rest.

Forty minutes later I was out the door and stopped to pick up coffee K-cups and got the chance to see my youngest, Meg and chat for a few minutes.  Then I went to Wal-Mart to shop for paper goods and items that are less expensive and work in my budget.  It was great to wander aisles and not worry about the time.  I left and stopped to put gas in the car on my way home.  It was after 4 and I decided that I had done enough and the gym would have been too much.  It was a good decision.

Doesn’t sound all that exciting, does it?  I didn’t go for a manicure or take myself out to eat, BUT what I did do was DRIVE myself everywhere!  After 9 1/2 years of not driving or working, I had finally gone for a new permit and had passed the road test (easily) on Tuesday, July 7, 2015.

Almost a decade of being dependent on others.  Never in a million years would I have imagined that it would have taken me this long to recover enough from 4 strains of Lyme and 10 co-infections and simply be able to drive by myself.  I know my family and close friends understand.  I know my Lyme friends get it.  I thought being able to go to the gym almost every day since April was incredible.  I thought being off antibiotics since mid-April was awesome.  I thought walking to the library and taking out books that I could now hold and read was so freeing.  Then I drove again by myself.  The shit-eating grin, the tears and the loud music were a medicine like no other.

Thank you to everyone who supported and believed in me during this process.  I knew enough to stop driving, so I trusted myself to know that I was well enough to drive again.  My son-in-law, Scott, called me a teenager the other day for the way I was acting.  Then he and Amy took me out to dinner to celebrate my achievement.  Yes, we let Dave come along.

Donna, Amy and Dave, your kindness and patience chauffeuring me everywhere for past decade go beyond anything I could put into words.  I also know that you will always be there for me, but now maybe I can be there for you. xoxo


What’s a year to a person with Chronic Lyme? August 12, 2014

Filed under: Uncategorized — iammorethanlyme @ 9:50 am
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Hello!  It looks like it has been almost a year since I blogged and that just seems so crazy.  I know I started some blogs, but never finished them.  It doesn’t seem possible that it has almost been a year, because there have been so many days during that time period that seemed so endless!  Those days where you just go through the motions and count the hours till bedtime fully aware that you have MADE IT through another day of pain, medications, medication side effects, and herxes.  I go to bed full of faith that tomorrow will be a better day!  Recently my thinking has changed….

I am starting to have better days.  What is better than that?  I am starting to sleep through the night!  This has not happened since my teen years.  I have narcolepsy and Chronic Lyme to wake me multiple times through the night.  I have narcolepsy which interrupts my REM cycles so that I never feel rested.  I had a sleep study years ago that showed 67 wakenings during the night.  Is it any wonder that I needed a job that kept me on my feet?  Too long at a desk and I would nod off.  There were a few cataplectic moments where my body just collapsed.  Of course, I used humor to make it easier on those around me.  Now 30+ years later, I am sleeping.  It is the most amazing thing in the world.  It is so great that it is hard to get out of bed even though I am fully rested; I just want to lay there awake and remember dreams.  Dreaming is wonderful.  I am thrilled to the point that I don’t even wonder if this is just a phase due to my new Lyme treatment protocol.  I will not be drawn into thinking negatively.  If my new antibiotics, supplements and detox agents are responsible for this – HALLELUJAH and can I have some more. 

My brain and my body need this sleep to recover and repair all the damage from Chronic Lyme.  I still rest during the day even if I had a solid 8-9 hours of sleep because this is how we heal.  Dave emails me everyday and always writes, “rest, rest, rest.”  He has no expectations from me except to do what I need to do to get well.  This is huge for me as I am well enough to accept and believe what he says instead of feeling guilty and useless.  He has seen me through this disease along with my sister, Donna, and my daughters.  They have seen me through the most horrible times and rejoiced with me each time I have battled back.  My eyes tear up as I think of these times and my mind conjures up images of what they saw and now the tears are flowing freely as I wish I could erase what they constantly witnessed.  A decade of pure love and selflessness…probably more to come.  How does one person convey their thanks for this?  I keep fighting this battle every second of every minute of every hour of every day because that is the least I can do for all of us.  I am honored by their love.