The unexplainable illness that has plagued Rose Schwarz for the past 12 years, making her unable to digest food and eventually resulting in the loss of her stomach, has recently been pegged as Lyme disease.
Parents of the now 25-year-old Rose, Tani Schwarz-Gilbert and Gary Gilbert of Sechelt, have started a new fundraising campaign to get their daughter the treatment she needs, which will likely be found outside Canada.
"It's up to us now to sift through and find out what we think is the best approach to begin Rose's therapy, and we may need to do more than one if the first one doesn't work," Gary said. "There are no standard medical doctors in Canada who know what to do, that we know of. We've been trying to find one, but it seems the only people who are treating it are naturopaths."
Tani explained that if caught early, Lyme disease, which can be transferred through a tick bite, is treated with a regular course of antibiotics "and it's gone."
"But the longer it's in your system, and it does all this changing and morphing and invading things, it gets harder and harder to kill and then that's when you have to go on this long-term antibiotic therapy, sometimes IV antibiotic therapy, which could take months or years," she said.
"Because Rose is only 74 pounds right now and she's so sick because she's had it for so long, she'd have to be on that therapy for a long time and it could wipe her out, so we're looking at other things."
Tani said that any treatment in B.C. would likely come through a naturopath and "that's not covered under disability or B.C. medical."
Rose's parents started an on-line FundRazr campaign called "The Continuing Fight to Save Rose" just last week, and within two days donations had exceeded their $5,000 goal.
Realizing after more research that "this could be a really long fight," Tani decided to up the goal to $20,000 and at the end of this week, donations totalled more than $12,000.
She and Gary also re-opened "The Rose Fund" at Sunshine Coast Credit Union and some members of the public have been donating that way.
Rose and her family have been overwhelmed by the generosity of the community.
Tani suspects her daughter contracted Lyme disease when she was just 13, when the family lived in the Kootenays. Rose never felt the bite and she doesn't remember developing the usual "bulls eye rash" accompanied with Lyme disease, but in 2009 she found a tick head lodged deep under her skin.
Immediately Tani had her tested for Lyme disease in Canada, but the test came back negative, so the family moved on to look for other causes of Rose's symptoms that included achy joints, memory loss, inability to digest food and persistent vomiting.
It wasn't until January of this year that a friend of the family suggested Rose be tested for Lyme disease again through a lab in California.
"The test came back 100 per cent positive, not only according to Igenex Lab standards, but also the U.S. Center for Disease Control's standards, which is very rare," Gary said. "When we got that test back it was like 'oh my God, we've been looking in all the wrong places.'"
Tani explained that the Lyme disease test used in Canada, the ELISA test, "has a high error threshold, but we didn't know that back then."
"What's so frustrating is if we would have caught it then, she would still have a stomach and her teeth. We may be able to reverse some of the damage that's been done, especially the malabsorption of food, but some things with Lyme disease are irreversible when things have gone too far," Tani said.
Rose is thankful for all those who have offered her financial and moral support, especially during the last few months while she has struggled with a debilitating headache and rapid weight loss despite tube feeding daily.
"After all these years of not knowing what caused me to be so sick, I finally know why. Now when people ask me what caused my gastroparesis, I can tell them. It is a relief and also scary, because now we have to find treatment, and from what we have found out so far, it won't be easy," Rose said.
"I am so grateful to the community here on the Sunshine Coast for all they have done for me and am so amazed at their continued generosity. I also hope that my being diagnosed with Lyme disease will bring awareness and help to other people who may also be suffering and not know why."
Tani encourages anyone who wants to know more about Lyme disease to get in touch with her through Rose's Facebook page titled "The Continuing Fight to Save Rose." The community can also stay up to date with Rose's story on that page.
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