Lisa's LYME Treatment Fund

Hello, my name is Lisa Waldegrave and I am writing this letter as an appeal for financial help to receive treatment for chronic Lyme disease and the co-infections; Bartonella, Babesia and Epstein Barr virus. I find asking for help a difficult thing to do, but realize I cannot do this on my own anymore. I have been unable to work since Oct 1990 and have been through hell and lost many years in the prime of my life, due to these infections being misdiagnosed for over 10 years.  

I am reaching out to all of you; my friends, family and acquaintances for donations to reach my GOAL of $14,000 to cover the cost of my new evidence-based treatment protocols for the next 2 years. I am praying these focused treatments will allow me to finally have a breakthrough in my healing, turn the corner and retain recovery. Even if you aren't able to donate, I would be grateful if you could take a moment to read my story and perhaps share the awareness.

My Long Journey: I do not know exactly when I contracted Lyme disease, as many people do not.  It may  have started in childhood when I developed a round scaly rash on my outer thigh or years later during the spring of 1984, when I had a flu-like illness that really knocked me down for about 6 months. The doctor said it was probably just a virus and that I would recover with time. However, after this event I found whenever I was under any physical or emotional stress, my health started declining again with symptoms of weight loss, nausea, excessive thirst, fatigue, depression, anxiety and sleep problems.  After returning from a vacation in Venezuela in Jan1989, I developed another flu-like illness and later that summer I began experiencing extreme heat intolerance, panic attacks, irritability, achy muscles, fatigue and itchy skin. I was told all these symptoms were stress and anxiety related, so I soldier on and took anti-depressants.  

By Oct 1990, I could no longer work, as I was becoming disorientated when driving my car. I also had short-term memory loss, executive functioning issues, dizziness, low blood pressure, physical & mental fatigue, brain fog, severe moods swings, extreme muscle pain and weakness.   I was diagnosed with Chronic Fatigue Syndrome/Fibromyalgia and Immune System Dysfunction. Over the next 5 years I tried a number of conventional and complimentary treatments, but nothing helped to improve my condition.

 In 1995, I tested positive for Lyme Disease on 3 separate occasions through the Public Health Labs in Ontario.   I received a few of months of an oral antibiotic and for the first time in 5 yrs, I started to see some improvements in my condition. But it was not enough to bring about a recovery, as I was also co-infected with other microbes/viruses, that we didn’t know about at the time. Over the next 5 years my doctor referred me to four Infectious Disease Specialist in Ont., with the hopes that I would receive more aggressive treatment.  I was unable to secure a Lyme diagnosis or receive any treatment from them for my chronic condition. I was told my positive Lyme test results were false positives and that I could not possibly have Lyme, as I did not recall a tick bite,bull’s eye rash or have arthritis.   These statements are typical responses from Canadian doctors, but are not completely accurate. One does not have to meet these criteria to be infected with the Lyme  bacteria. 

In 2003, after 8 years of much confusion, going around in circles from one specialist to the next, my parents drove me to East Hampton, New York to consult with one of the top Lyme Literate Medical Doctors (LLMD) in the USA. Based on my symptoms, previous positive Lyme blood tests, Immune System Dysfunction and brain Spect Scans results, I was finally diagnosed with Lyme and the co-infection Babesia (a parasite of the red blood cells). It took 13 years from the time I became ‘disabled’ by these infections to receive an accurate diagnosis.

The Federal and Provincial Government, Public Health Dept. and Physicians are only now,  just starting to recognize the big problem of Lyme disease in Canada. But they still do not recognize the chronic form of Lyme or the co-infections. Therefore, treatment for these multiple infections is essentially unavailable here in Ontario under OHIP, so Lyme sufferers are forced to travel out of country to get help. I am not alone in this, there have been over 3000 Canadians who have traveled to the USA or Europe and paid out of their own pockets, to get an accurate diagnosis and treatment. 

Since my diagnosis in 2003, I have completed various antibiotic combinations in conjunction with some complimentary treatments, most of which were paid for by my wonderul parents. I have made much progress with my health and am more functional and healthier looking these days.   

However, I have hit a plateau in my recovery. I am now under the care of a Lyme Literate Naturopathic Doctor (LLND) in Ontario, who has received special training in Lyme and co-infections from www.ilads.org

'Lyme doctors' now understand that numerous problems and co-conditions can be occurring in a chronic Lyme patient, that must also be addressed. Antibiotics alone will not bring about a recovery from chronic, late stage Lyme disease.

New Treatments: In Jan 2016, my LLND  started me on the Cowden Support Protocol, which is an evidence based, herbal treatment protocol found to be effective in markedly improving the condition of 70-80% of the advanced Lyme patients with co-infections over 4-6 months. I will be on this protocol for 9 month – 2 years.  In addition, she believes I am co-infected with Bartonella, (another tick borne infection) which has never been treated, but causes many of the neuro-psych and cognitive symptoms I still suffer with. We will aggressively be treating Bartonella this summer. I have high levels of the lead and mercury in my system, which will be removed, using oral chelation medications, as heavy metals negatively impact the immune system.  I also have active Epstein Barr virus.   I require a number of supportive therapies, supplements, anti-oxidants, hormones, detoxification products, to assist me through the arduous process of eradicating the harmful pathogens, repairing the damage and restoring homeostasis to my body, mind and spirit.

Presently, my treatment costs are $900.00 a month.  My parents and I pay $400 a month combined. I cannot afford anymore than this, as my only source of income is a small monthly disability income from both CPP Disability & Social Services.  I am so grateful to my parents who have already spent  thousands upon thousand of dollars over the past 20 yrs, to get me to the level of recovery I have achieved.   I feel I can no longer ask them to pay for the bulk of my treatments.

I am hoping and praying that I will have a MAJOR breakthrough this year.  With the help and support of my family, friends and acquaintances, I believe WE CAN achieve this!!!  I would be ever so grateful, as I would love to be able to earn an income again, increase my exercise regime, learn how to cook, perform household chores, live independently of my parents and integrate back into society, to live a more active and fulfilling life.

~ If you have been touched by my story and would like to donate to my campaign, I would be very appreciative.  Please click on the orange 'DONATE' box - located at the top right hand corner of your computer screen.  There is also an option to donate once a month. Some people have expressed concerns about using their credit card for on-line donations.  You are also welcome to donate by cash or cheque if you prefer.  Please message me on this site and I can let you know how you can do that.

~ A BIG thank-you to my sweetheart Dave for all of his unconditional love, support and many hours helping me with this campaign. A special thank-you to his sisters Cris and Trish for their assistance and to Dave’s cousin Erin for her tremendous help and time with this campaign.  I’m so appreciative of my long time  friend Connie Bartley and Linda Woods from The Clarity Centre for co-organzing a yoga karma class, to raise funds for my treatment. I couldn't have done it without all of them.   I feel very grateful and blessed!!!

To learn more about Lyme and Tick Borne disease and how to prevent a tick bite see links below: 

Lyme Prevention, Lyme Basics, Lyme Diagnosis and Safe Removal of a Tick – www.canlyme.com

About Lyme Disease in Ontario / How to Properly Remove a Tick – http://lymeontario.com


Recommended Viewing

http://www.cbc.ca/natureofthings/episodes/ticked-off-the-mystery-of-lyme-disease

 http://www.underourskin.com/#home-emergence

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Organizer

Lisa Waldegrave 
Organizer
Oakville, ON
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