Jackies Journey with a Tick-Borne Illness

WHAT THE HELL HAPPENED TO ME

On a day, not like any other, Jackie went to work and started the day feeling 100% normal, healthy and happy. By lunch, not so much, a heavy feeling came over her, her legs and arms went numb with lighting like jolts of pain coming and going, her head became clouded, couldn’t think clearly, and finally her heart raced uncontrollably before taking a knee. By End of day, she was exhausted, confused and miserable with horrible Flu like symptoms.

The next day, she spent her first of many in bed, thinking it must be an awful flu as the symptoms kept getting worse. Finally, chest pain became so severe, an ambulance delivered her to the ER at the Health Science.

With Dr’s offices closed and an Emergency Dept solely focused on Covid, very little was done to even look at her during her initial symptoms and help seemed almost like it does now, unavailable.

By the time she got her first Dr. apt, she had already experienced the majority of symptoms she still faces today, 2 years later. But they had not stopped there, they escalated with even more problems continuing to appear day after day and week after week. Her journey with suspected tick-borne illnesshad begun.

 

WHAT THIS IS ALL ABOUT

Jackie is facing a debilitating disease that takes away her ability to function day to day, to mother, to provide for herself, to enjoy her time with family and friends but most of all to know what’s coming next or to plan for anything in the future. It’s as if life has been taken from her because of a bug bite that could easily affect anyone’s life.

This disease is not treatable by antibiotics unless it is caught at time of occurrence and recognized early, which it isn’t by many with this infection. The frightening fact is anyone and everyone are at risk of contracting this disease right in your own back yard with no idea it even happened. Many Newfoundlanders and Canadians have suffered the consequences, and many continue to try and find out what is wrong with them.

The Health Care System is obviously flawed, and a better system needs to be put in place but that is something Jackie cannot wait to happen.

The symptoms of this disease mimic many other serious diseases like MS, Lupus, ALS, Parkinson’s, Rheumatoid Arthritis, all types of Neurological and physical disabilitieswhich makes its diagnosis difficult. Jackie faces all the symptoms that can be determined as either of these diseases.

There is an undeniable stress that everyone with this disease must contend with, the inability to work, the cost of weekly therapies that provide little to no help and relentless pursue of determining what is wrong with you. The list goes on.

Facebook groups and other social media platforms are starting to give wind to change. Even the Canadian Government has made promises to change how its deals with tick born illness but as of now, it hasn’t, which unfortunately leaves many in the same position as Jackie is facing right now. Do whatever you can to find help, find answers to your symptoms and seek treatment anywhere.

Here are some Links to Help you understand what this Disease is all about.

W5 Documentary on Lyme disease 

Avril Lavigne Foundation 

There are many others and stories of people who are suffering with Lyme with No help.  Just a simple Search on any Social Media Platform will point you towards many facing the same story.

THE PROBLEMS SHE MUST DEAL WITH

After seeking help from our Healthcare system, all options within our Province have been exhausted with absolutely no solutions to the symptoms that are taking away her ability to function.

Jackie has been rushed to the Emergency rooms in St. Johns a total of 18 times in the past two years and has bi-weekly appointments with her local Family Dr. to monitor her health, she has had numerous lab tests and all with no successful diagnosis or treatment.

The following is a list of those appointments, the treatments and diagnosis she was given.

Family Dr :

- Dozens of visits to find out what is wrong

- blood labs and prescriptions to treat Fibromyalgia, and medication to balance the headaches and foggy-ness associated. This worsenedsymptoms and created further discomfort.

- Various Pain Medications (non opioid) to try and lower the severity

- Ultra sounds, MRI, CT Scans

- Referrals to all possible Specialists

Specialists:

- The list of specialists includes ENT, Rheumatologist, Oncologist, Dermatologists, Nutritionist, Heart and Lung and various Emergency room Dr.’s

Other professional therapies:

- Physio Therapist(s), Chiropractor, Massage Therapist, orthopedist and Acupuncture to name a few.

These specialists in their designated areas gave various diagnosis of possibilities but the one thing that they all had in common was she is facing an autoimmune disease like nothing they have ever seen. The treatments they provided to help Jackie with her symptoms had little to no effect on her condition and in some cases worsened them.

Her journey to FunctionalHealth Care had now begun.Afterreaching out toautoimmunecenters all over Canada and the US, she had found a Dr. in Calgary who was literate in everything to do with these conditions. Her Dr. was adamant that testing be sent to a highly reputable lab outside of the Country as everyone with this condition must seek help outside of this Country. A statement that all centers that got back to her recommended.

Her labs were sent to Germany and her test had come back positive for Lyme and for many co- infections. Finally, not because of how great it is to receive a positive test but to now officially know what she was dealing with. Jackie’s Calgary Dr. has referred her treatment to a Specialty Clinic in Mexico as her condition is severe withlate-stage debilitating symptoms and this clinic has turned around many of her patients’ conditions this far into the disease.

After a consultation with the US physician in Mexico and review of her lab tests, she has been diagnosed with Neurological Degenerative Auto Immune disease with co-infections. Or simply put, Lyme Disease.Its also imperative that she seeks help as soon as possible due to her condition and stage of the disease. Its suspected she had this condition for much longer then the 2 years she has been experiencing her symptoms as they are severe in nature.

Mexico has leading edge treatment options and with a team of Specialists, Dr.’s, Labs and access to care options that is impressive to say the least. They also have communication with Canadian centersand her Family Dr. so that she can receive post treatment care at home after her 1-month treatment.

Jackie’s treatment will consist of many options from her initial lab testing, IV protocols to boost her immune system and replenish nutrients, Oxygen and Hyperthermia treatment to cleanse her blood of bacteria, Laser therapy for relief of pain and to pinpoint treatment to her specific symptoms and finally Stem Cell treatments to repair damage done by this disease. This treatment protocol has had high success rates for patients who have received it and has given the lives back to many who have attended their clinics.

Although there are options for treatment in the US, Germany and Europe that quite possibly equal this treatment, their cost is equally or in most cases much more expensive because of long treatment protocols requiring accommodations out of country. Mexico has the most treatments given in the shortest amount of time and has more options than any.

 

Jackie’s Symptoms are many and unbearable to live with daily without the hope of treatment, a full list of what she faces daily is broken down to give an idea of why it’s such a debilitating disease.

Head, Face, Neck

• Headache, seizures

• Pressure in head,

• Twitching of facial  muscles

• Facial paralysis (Bell’s Palsy, Horner’s syndrome)

• Tingling of nose, tongue, cheek and facial flushing

• Stiff and painful neck

• Jaw pain and stiffness

• Unexplained hair loss

Eyes/Vision

• Double or blurry vision

• Increased floating spots

• Pain in eyes and swelling around eyes

• Oversensitivity to light

• Flashing lights, peripheral waves

Ears/Hearing

• Decreased hearing in both ears

• Buzzing in ears

• Pain in ears, oversensitivity to noise

Digestive and Excretory Systems

• Irritable bladder

• Upset stomach (nausea or pain)

• Acid Reflux

• Diarrhea

• Constipation

Musculoskeletal System

• Extreme bone pain, joint pain and swelling, carpal tunnel syndrome

• Stiffness of joints, back, neck,

• Muscle pain or cramps, (Fibromyalgia)

• Inability to walk, lift or bend

Respiratory and Circulatory Systems

• Shortness of breath

• Chest pain and rib soreness

• Heavy night sweats or unexplained chills

• Heart palpitations 

Neurologic System

• Tremors or unexplained shaking

• Burning or stabbing sensations in the body

• Fatigue, Chronic Fatigue Syndrome, weakness, peripheral neuropathy

• Pressure in the head

• Numbness in body, tingling, pinpricks

• Poor balance, dizziness, difficulty walking

• Increased motion sickness

• Light-headedness,

Psychological

• Disorientation

• Over-emotional reactions

• Too much sleep, or insomnia

• Difficulty falling and staying asleep

• Panic attacks, anxiety

Mental Capability

• Memory loss (short or long term)

• Confusion, difficulty thinking

• Difficulty with concentration or reading

• Going to the wrong place

• Speech difficulty (slurred or slow)

• Difficulty finding commonly used words

• Stammering speech

• Forgetting how to perform simple tasks

General Well-being

• Weight loss

• Extreme fatigue

• Swollen glands or lymph nodes

• Unexplained fevers (high or low grade)

• Continual infections (sinus, kidney, eye, etc.)

• Symptoms seem to change, come and go

• Pain migrates (moves) to different body parts

• Early on, experienced a “flu-like” illness, after which you have not since felt well

• Low body temperature

I know, it’s a lot, it is definitely alot to try to live with and have a life that has any hope when facing these conditions, especially as they have now progressed to the stage of leaving her bedridden and unable to function.

It’s from desperation that we require assistance funding immediate medical attention for my sister Jackie. Over the past few years Jackie has faced many letdowns and misdiagnosis or just a simple “I don’t know what it could be” which is why she is at this stage of the disease and requires such immediate attention.

The cost of her treatment is $54,000 CAD which does not include any other expenses beside the treatment plan from her referred clinic.

She has already spent thousands getting care from specialists and therapies not covered by insurance and for all her testing outside of the Country. She has also taken care of her travel and accommodations. This is by far her best chance of beating this disease and overcoming her symptoms.

 

A personal note from Jackie I wanted to share.

“This last year has been a very lonely and debilitating time. As every day passes, this disease continues to rapidly infest my body and mind. I no longer have control over my life or this disease, it controls me.

Now my days consist of lying-in bed, looking through glass at a world I am no longer part of or can participate in.

I’m just a shell of the person I used to be, non-recognizable to myself. I miss my family, I miss my friends, I miss being me.”

“This treatment is my only hope that I can get back to being who I was.”

“I am so very grateful for everything that everyone has done for me thus far and for those of you who have supported or shared my story,Thank-you.”

Jackie