A Kelowna resident is hoping that sharing her journey with Lyme disease will educate and encourage others to listen to their gut.
Santana Welsh says her journey with the tick-borne disease has been anything but smooth.
Welsh has been fighting the disease for 15 years and has been forced to seek treatment in Mexico due to what she says is a lack of knowledge and understanding of the disease in Canada.
Welsh says she started developing symptoms in 2012 and moved to Kelowna a few years later.
"I had a lot of fatigue... the majority of my symptoms are physical. I eventually started walking quite poorly and had gait issues and mostly limb problems. My legs stopped working, and then I had problems with my arms, and now I am in a wheelchair," said Welsh.
Her health problems were misdiagnosed by B.C. doctors as multiple sclerosis, for which there is no cure.
"I got treated with a really intense MS drug that basically wiped out my immune system. When you wipe out your immune system and you actually have a bacterial infection, you can imagine what happens afterwards."
Welsh says she never really identified with her MS diagnosis.
"Until the beginning of this year, I was told 'oh yeah well, that is just the MS...it's just progressive.' When I finally talked to a Lyme doctor, they [said] you just have an infection running rampant in your system."
She did not consider she had Lyme disease until hearing a story about another woman who had Lyme misdiagnosed as MS.
She says he ran into resistance from doctors when she brought up Lyme disease, leading her to shop around.
"It just really didn't make sense what my doctors were telling me. All my MRIs were stable, but they were convinced that was what it was."
She says she was tested three times for Lyme, and tested positive all three times, but doctors were hesitant to treat her for the illness.
"I continued to decline and kept getting worse."
"It was really awful...doctors looking at me like I was nuts. Trying to explain to them that I have had blood tests done and since when do you not trust blood tests? It was strange having trusted medical professionals look at me like I didn't know what I was talking about."
She says her neurologist didn't believe she had Lyme.
"She looked at me and said if you want to take a week of antibiotics to make yourself feel better than do it. Your whole life you trust these people, and then when they let you down it can be emotionally exhausting."
There are roughly a dozen cases of Lyme contracted in B.C. every year, making it a very rare and unfamiliar disease for doctors.
Welsh says she was told by a friend to seek treatment in Mexico.
"We went down to Lyme Mexico thinking, at the very worst, we will get two weeks of treatment for regenerative therapy, and at best, we will get a positive result."
Lyme Mexico Clinic specializes in the treatment of the disease and is located in Puerto Vallarta.
She said the results have been astounding.
"It was about as positive as it could get. We went down in February and were there until the end of March. It was a pretty intensive six weeks."
"I am feeling pretty good. My doctor down there was very pragmatic and very cautious not to be like 'hey this is the cure'... He said 'it took you a long time to get here and it is probably going to take you a long time to get any results.' I am in constant contact with him, and the treatment is ongoing, and I have definitely seen some progress."
A GoFundMe has been started by friends of Welsh to help cover costs for treatment. It has raised over $8,000.
Jared Lee is the co-owner of Central Kitchen And Bar in Kelowna and has worked with Welsh and her partner for years.
"Santana has been fighting for the past 15 years," Lee said. "Due to the lack of acknowledgement and coverage in Canada, they have been forced to outsource expensive treatment to attempt to repair nerve damage that has resulted in Santana’s inability to walk."
Central Kitchen will also be hosting a silent auction on July 29 to raise funds.
"She has been once, but the goal is to get her back out to Mexico again. We are very motivated. If not, at least recoup some of those costs that have had her in a wheelchair," said Central co-owner Devon Murray.
The silent auction on Saturday will run from 11 a.m. until 12 a.m.
Lyme disease is transmitted through the bite of an infected blacklegged tick. According to Canada's government website, symptoms can vary from person to person.
