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.






The ABCs of Lyme November 6, 2017

Filed under: Late Stage Lyme Disease — iammorethanlyme @ 11:01 am

A is for Avoidance.  This can be social avoidance or personal avoidance of dealing with what is right in front of you.  My home is full of avoidance right now.

B is for Beating Oneself Up for everything you think you should have done, could have done, could have done differently, should have known, should have seen coming or should have dealt with already.  This is me from the moment I wake up till I go to bed.

C is for the Courage to continue on every day hoping to feel better, making the right choices and accepting that you have a horrible disease, but you are still a valuable part of society.

D is for Denial.  Denial comes at you from every direction and began way back when you were trying to figure out why you felt so awful.  The medical field – DENIAL; insurance companies – DENIAL; family and friends – DENIAL till it finally makes you DENY that anything is really wrong.

E is for Effort.  The enormous effort it takes to get out of bed each day and hope that this day is better than yesterday and that tomorrow will be even better.

F is for Flare Ups.  The sooner you stop trying to pinpoint the “why” of a flare up, the better.  Examples: is it the weather, is there a full moon, is it my Lyme cycle, is it because I went to the dentist, is it because I stayed up too late or got up too early, did I eat the wrong thing, did I not drink enough water, did I forget a supplement, did I up an herbal treatment, did I start a new medication, am I STRESSED?  Who wouldn’t be with just that short list of reasons?

G is for Grace.  We exemplify Grace by going out into the world each day and performing tasks with everyone else as if we are all the same.  People in stores, on the highway and at the gym don’t know that I am having an anxiety attack at the thought of the exertion mentally and physically to accomplish what they do without a second thought.

H is for Happiness.  Yep, I said Happiness.  I look for it everywhere.  Maybe you thought I was going to say Health, maybe I should have, but I went with the first H word that popped into my head.  Here are a few things (other than family and friends) that make me happy: music, books, baking, sunrise, sunset, snow, trees swaying in the wind, squirrels running through the trees, flowers blooming, the gym, the library, walks outside, thunder and lightning and dancing.

I is for Indescribable.  I don’t know about you, but I cannot begin to put into words the pain of Lyme disease.  If it is not a headache, it is a muscle.  If not a muscle, it is a tendon; maybe a joint or a limb or two limbs or your spine or your feet or fingers or your SKIN.

J is for Justice.  There needs to be accountability for the powers that allow Lyme disease to continue to disable and cause the death of so many.  I would not wish this on my worst enemy.

K is for Ketogenic diet.  Cutting out sugar and grains has changed me in such a positive way.  I no longer carry 50 pounds of inflammation weight and I do not have cravings.

L is for LDI (low dose immunotherapy).  I started LDI last year and am still on the smallest possible dose spread out over months instead of 6-8 weeks, but I feel hopeful that this will help my body fight the Lyme.

M is for Mindfulness.  This is “a mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique”.  I don’t know if I will ever perfect this, but I continue to try.

N-Z tomorrow.  Peace


When Chronic Lyme hits you in the face April 1, 2016

Filed under: Uncategorized — iammorethanlyme @ 1:00 pm

My husband, Dave, is home today as quarter-end is over and his area is closed.  This means that I can have the car for a while to do a few things before he takes his Dad out.  I amped myself up thinking of what I wanted to do.  I was ignoring the fact that I was still recovering from a horrible die-off/flare-up that has left me exhausted to the point of tears and in too much pain to do much.

Dave said something that made perfect sense to healthy people.  It was, “you should just go do x,y and z and if you get tired, leave the store you are at.”  Oh no, you didn’t just say that?!  I already feel like I have tried to explain this to everyone over and over again.  Dave is patient, understanding and takes great care of me.  Does he really not understand or did I just annoy him with my indecisiveness?  Let me explain….

The length of time I have had Lyme and co-infections has absolutely affected the way I think in two ways; the lesions on my brain add to the mystery of what I might say or do and being sick for so long makes me realize how precious the “good” time is in a day.  I over think, over plan and worry about the best time to go out on my own and try to accomplish anything.  This may just be a trip to the library or to the pharmacy to get a prescription.  Most people grab the keys, their wallet and head out.  I have to write everything down so I don’t forget where I am going.  I leave my house and get to the car only to realize I left something I need inside.  This means climbing back up our miserable front steps, retrieving said item and hobbling back down to the car.  Nothing from this point on is automatic.  I have to tell myself every time to adjust the seat, buckle my seat belt, check which side is the blinker and which is the wipers.  Do I need my lights on?  OK, which side of the column are the lights on?  New car? Nope, 15 years old.  This is Lyme.  Backing out of the driveway now and checking 20 times to make sure it is clear and we are off.  Shit, where was I going?  Right, the library.  Crap, I headed the wrong way.  Turn around or go to the pharmacy and wind my way back to the library.  Oh, are we having fun yet?   Shit, do I have the high beams on.  Thank God I am listening to some good music.  Did someone just text me?  Ignore it…I hope it’s not important…ignore it…arrive at pharmacy.  Check that the car is in park, are the lights on? Shit.  Oh yeah, who texted me.  Nothing life threatening, answer them that I am out.  Get out of car, get my balance, lock the car.  Go to store, wait, did I lock the doors?  Go back and check.  This time I make it in the store and go straight to the pharmacy.  Wait where I am supposed to.  My turn and I know everyone so we chat.  Time to pay.  Do you have a wellness card?  I know this.  Yes, but my husband has it with him.  Please enter your phone number. You need to hit enter.  Shit, I know that.  Swipe your card and follow the directions on the screen.  That means that they end up doing most of it.  Do you want cash back?  Just press Yes or No.  No, but I press yes,. Shit~!  Don’t worry, everyone does it.  Oh, do they?  Really? Do they do it every time in every store?  Fuck.  Bye, take care.  Now I probably need toothpaste, shampoo, greeting cards and I start to walk down an aisle and my eyes fill up.  I am so worn out.  I can’t think of what I need.  Where is my list?  I just want to go home.  This isn’t hard, you can do it.  NO, No I can’t.  I did the thing I had to do.  I am out of there.  Back to the car.  Put the key in to unlock it, turn it the wrong way again.  Here we go again with the running list of what to do and check.  I skip the stop at the library as that would mean getting out of the car again and my body hurts too much.  I pull in the driveway and shut off the car.  I look at the stairs I have to climb again. SHIT, SHIT, SHIT.

Every single thing I do is either said out loud or thought in my head.  Nothing is automatic.  The thought of going through this every time I leave the house is why I only make one trip out in a day.  The thought of leaving a store without completing the task would be complete failure and I have enough “fails” to last five life times.



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

Filed under: Uncategorized — iammorethanlyme @ 2:41 pm
Tags: , , ,

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 Anxious People Know About Themselves August 22, 2014

Filed under: Uncategorized — iammorethanlyme @ 7:15 am

.A friend posted this on Facebook last night and I am posting it as it pertains to so many people I know.  In that group of people I know, there are lots of people/friends with Chronic Lyme and co-infections.  Some of these co-infections enter the brain and wreak havoc on our every thought.  I was diagnosed with anxiety, panic attacks and depression at the ripe old age of 19!  My source of control at that time was anorexia (didn’t work).  I went to therapy, use medications and humor to ease the symptoms.  Now enter Bartonella (my worst co-infection and it crosses the blood/brain barrier to boot) and this anxiety spills out of every pore of my being.  I am an emotional roller coaster.  I now see a therapist who specializes in chronic medical conditions.  I wanted to try and find purpose in my life now and try and figure out who I am after all these years of illness.  Now that I have opened up the door to her about my never ending “thoughts”, it has been an amazing release of years of imagined guilt I have felt over things said, not said, thought about, etc.  It is freedom from a self-imposed prison cell in my head.  I am slowly starting to say what I actually feel and people are not running for the exits!  Just like Lyme, no one wants to have crippling anxiety as it robs us of so much time.  Time is so precious.

From Our Readers by HappyGiggles Podcast

I have anxiety, and I believe I can speak for everyone with anxiety when I say this: it’s gotta be hard to be close to us. But there are seven things we want you to know that we don’t always know how to tell you.

1. It doesn’t have to do with you.

It can be pretty exhausting ruminating about everything we possibly have done wrong, are doing wrong, or could do wrong. We may want to sit and cry sometimes. We may be uninterested in our activities. We may snap at you, even though you absolutely don’t deserve it. We may even get nervous that you don’t love us anymore, even if you’ve given us no indication of this.

We want you to know above all else that it doesn’t have to do with you. It’s not your fault. We love you, and we’re so, so sorry if we ever give the impression that we don’t. We just don’t love our brain right now, and we don’t know how to deal with it.

2. Never try to talk us out of our emotions.

Trying to relieve us of our fear or sadness might seem like a good idea. And sometimes, it is. In fact, we might even ask you if we have any reason to be worried, so that we can try to combat that irrational part of us that is constantly afraid.

But there’s a fine line between trying to help us and trying to talk us out of it. Never tell us that our worries don’t exist, or that we can get over it if we just stop thinking about it. All that does is make us feel like we’re broken—that there’s something wrong with us that even our closest loved ones don’t understand.

3. Part of us knows that our fears aren’t rational, but we can’t shake the part that doesn’t.

Sure, we know that the embarrassing thing we said wasn’t really all that embarrassing, and it probably didn’t influence anyone’s opinions of us whatsoever, and that the entire group we were with today probably isn’t talking about how terrible we are behind our backs. We know how ridiculous that sounds, and it sounds even more ridiculous saying it out loud.

But that other part of us. . .that’s where anxiety lives. That’s where it can stay, feeding on us, popping out its head occasionally to remind us that it’s still there. That’s the part that always reminds us, “What if this time, my worries are correct?”

4. We are grateful for what we have—and for you.

Often, anxious people are labeled as pessimists. And that’s actually quite understandable. We’re pretty talented at coming to the worst possible conclusion almost instantaneously.

But that’s not always who we are. In fact, many of us are pretty optimistic between anxiety bouts. We do love our life, and we are grateful for what we have, and we are especially grateful for you. We don’t mean to focus on the negative, but sometimes, we can’t help it. Know we always appreciate you. You are the light at the end of our tunnel. You are the one who tries your hardest to understand, who knows us in and out and still is willing to stay.

5. We know you can’t always see things from our perspective, but we appreciate you trying.

As someone who doesn’t suffer from anxiety, we know you won’t be able to fully understand. We know that we might sometimes sound crazy, and we’re sure it can be frustrating to have to drop everything and calm us down.

But every time you answer our fearful texts with reassurance and kindness, or pull us into another room to ask us what we’re worrying about, or are simply there, steady, supportive, without questioning the way we operate. . .we can’t even express how much that means, because it’s rare to find.

6. We wish we could turn it off, but we can’t.

Though it might seem otherwise, we don’t want to focus on what could go wrong. We don’t want to be negative, or bring the mood down, or nitpick about things that may seem little to an outsider. We’re not trying to get attention.

We know how we sound sometimes, and we wish we could turn it off. But it’s just a part of who we are.

7. It doesn’t define us.

We may have anxiety, and it may be a part of us. But so are our passions, our quirks, our personalities. Anxiety is one of countless parts. We still laugh. We still feel the wind in our hair. We still appreciate a steaming mug of coffee early in the morning, or the sun warming our skin in the summer.

We still love you. We always will.

Sammy Nickalls is a writer and the content manager of Inspiyr.com, an online magazine helping people get healthier, happier, and more successful. She is an avid health nut, as well as a lover of yoga, gaming, books, and tea.



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

Filed under: Uncategorized — iammorethanlyme @ 9:50 am
Tags: , ,

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.


Relapses, bulging disks and doctors – OH MY Part 3 September 27, 2013

Filed under: Uncategorized — iammorethanlyme @ 5:13 pm
Tags: , ,

Feeling totally dis-empowered now by the eight days of waiting for a doctor to help me with my back, I went to their website to send an email and their computers are still being upgraded.  Wait, what’s that..Contact Us and when I clicked on it, there was the phone number and a title “We Value Your Opinion” with a box to type in.  Hmmm, should I, dare I, what the heck.  My first line was, “I wish you valued your patients.”  Subtle, of course not. I went on to detail as in as few words as I could what had transpired this past week.  I ended with, “Please tell me what I did wrong.”  Then I added my name, phone number and email address.

I thought that this would not be seen for a while and started to get angry at myself for sending it.  Apparently I had done something wrong.  Why would any doctor that you have a very good relationship with let you suffer as I have for the past week?  As I mentally beat myself up, I decided to call my Lyme doctor as I have been waiting to be rescheduled and had to leave a voice mail.

No more than 10 minutes later, the phone rings and it is my PCP’s assistant telling me that a note for physical therapy had been faxed to the number I had provided.  Could someone have possibly read that email already?  Probably coincidence, right?  My phone rings again; it is my Lyme doctor’s office.  The news is not as good.  She is still out on medical leave and will be back soon on a part-time basis.  I am concerned as I know she was being treated for Lyme when we met, but it is none of my business to ask.  When is my appointment?  Monday, NOVEMBER 4th at 9:30 in the morning.  That will be four months from the last time I saw her and I have not been well since the last visit.

Time for more mental notes to self; “Why should I be upset?”, “It’s not her fault she is ill.” “It’s almost October already, so I’ll be fine till November.”  This is me and my brain.  The same brain that had me convinced I might as well give up the idea of physical therapy and suck it up.  Unfortunately, this is not due to Lyme, this is the way I am wired.  I MUST have done something wrong to have these things happen to me.  It is easier to turn the feelings inward.  At least that is what I tell myself well knowing it is costing me a lot actually.