Lyme Disease Journey in Canada

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SARA B. FROM ONTARIO, CANADA

Scroll down to read Sara's story! 

 

 

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SARA B. FROM ONTARIO, CANADA; 30 YEARS OLD

 

[For even more about Sara's journey, please visit her website: http://www.soulnutritionconsulting.com/].

 

 

HOW LONG DO YOU BELIEVE YOU HAVE HAD LYME/TICK-BORNE ILLNESS?

 

Bit in the spring of 2014.

 

HOW LONG DID IT TAKE YOU TO GET A DIAGNOSIS?

 

Diagnosed in March 2016.

 

DID YOU SEE MULTIPLE DOCTORS BEFORE YOU WERE DIAGNOSED WITH LYME? IF SO, WHAT TYPES?

 

Yes, other than my family doctor I saw two rheumatologists, an immunologist, gastroenterologist, two internists, and more than six resident doctors.

 

WERE YOU DIAGNOSED WITH ANYTHING ELSE BEFORE LYME? IF SO, WHAT?

 

Palindromic rheumatism, an “undiagnosable” autoimmune disease, Rheumatic Fever, possibly MS or ALS, Munchausen’s, a viral infection lasting longer than a year, and many more I can’t remember.

 

ANYTHING ELSE YOU WOULD LIKE TO SHARE ABOUT TRYING TO FIND A DIAGNOSIS:

 

In the fall of 2015 I started becoming very weak, unable to walk up the stairs, chest pain was increasing and we had talks of possible cancers.  Worried and not sure what to do next we went to the Mayo Clinic, costing $35K and hoping for an answer.  There I was told I didn’t have the symptoms of Lyme Disease and was told I had a “brewing” autoimmune disease and it was suggested I take steroids and immune suppressing drugs to manage symptoms.  Listening to my body and my gut, I knew this wasn’t the case; I can’t explain how but I just knew it wasn’t an autoimmune disease.  Refusing the meds, I looked into Lyme a bit more and we soon realized how likely it was I did in fact have Lyme from that insect bite back in 2014.  At this point I was in excruciating pain daily and wasn’t able to move on my own.   We had my blood sent to Igenex and four weeks later had a CDC positive result.  From there I had booked an apt with a LLMD and have finally been able to move forward. 

 

HOW LONG HAVE YOU BEEN TREATING LYME FOR?

 

I had a central line placed in June 2016 and am still currently on IV antibiotics.  I go to a LLMD in Washington and they’ve saved my life. I can walk again on my own, getting weak from time to time and still needed help to move but I’ve made milestones so far.  Next month we’ll assess if I am able to remove the IV line and transition to oral antibiotics. 

 

DO YOU HAVE ANY COINFECTIONS? IF SO, WHICH ONES?

 

Yes, more specifically (and the worst of them) are Bartonella and Babesia. 

 

WHAT TYPES OF TREATMENTS HAVE YOU TRIED?

 

Two months before my diagnosis I’d seen an internist who gave me a script for 30 days of doxy, citing “If it is Lyme, I don’t see if this can hurt.”  After five days I was incredibly sick and nauseous, so we stopped the antibiotic. At this time I didn’t realize it was a herx. 

 

I didn’t start any kind of treatment until my LLMD appointments when the IV line was placed in June 2016.  From this point forward I’ve been on IV and oral antibiotics. 

 

LIST _UP TO_ 5 OF YOUR BIGGEST (PAST OR CURRENT) SYMPTOMS:

 

* PAIN. Very intense neurological pain.
* Joint pain and inflammation.
* Extreme weakness and inability to lift my head, arms, legs. 
* Body spasms and twitches
* Fevers

 

 

WHAT IS THE BIGGEST WAY THAT LYME HAS AFFECTED YOUR LIFE? 

 

It has forced us to stop what we were doing.  Life had to slow down and our focus had to shift. I believe it was a wake up call to shake me from the routine of daily life and force me to ask myself, “what do you really want from life?”  I’ve gained a great appreciation for this illness.  It has come with many lessons and because of it I know I’ll live a more fulfilling life doing things that will truly make me a happier, more whole person. 

 

 

WHAT DO YOU WISH PEOPLE KNEW ABOUT LYME DISEASE?

 

I wish people understood the gravity of this disease.  There needs to be more awareness so people take preventative measures.  I wish that when I say, “I have Lyme Disease,” that I don’t worry what the response will be.  There needs to be a change, our government needs to acknowledge this as an endemic problem and come together to allow affordable access to healthcare without discrimination.  Our doctors need more education about this disease. 

 

ANY ADVICE FOR SOMEONE NEWLY DIAGNOSED WITH LYME?

 

Don’t lose hope.  It can be a dark hole to fall down, but without darkness there can’t be light.  Listen to your body, trust your instincts, do your due diligence in selecting a LLMD that is right for you.  ILADS and CanLyme both provide lists of LLMD’s.  Do your research and choose someone you can trust and has integrity.  Trust the process, healing doesn’t come overnight … it takes time and patience.  As difficult as this is, try to accept it. Allow things to slow down and allow your body a chance to rest and heal without pressure to do so.  And PROBIOTICS, these are very important! Start a good quality probiotic as soon as you think you might have Lyme or have just been diagnosed.  Eat real food, avoid processed foods, and drink lots of water.  Food is also medicine. 

 

I’ve started blogging about my journey for the last year. This has been very helpful to get my thoughts out, and to help increase awareness.  My goal is to help people, and by writing I’ve come across many people who’ve sent me messages saying how helpful it was.  This fulfills my heart and I hope my posts continue to help people.  If you want to read more about my journey, you can go to my website at http://www.soulnutritionconsulting.com/.

 

FUN FACT TIME! WHAT IS YOUR FAVORITE THING TO DO WHEN YOU’RE NOT ATTENDING TO YOUR LYME?

 

I love when I can find moments where you can forget, even for a few minutes that you have a chronic illness. That might be a visit with a friend, dinner out, or a short trip out of town.  Take on new hobbies; I’ve learned to knit.  I’ve also been able to take time to start reading again.  Basic, gentle yoga has also been reincorporated back into my life and I look forward to that movement every day.