By Vicki Ikeogu Monticello Times
Some days are better than others.
But lately, those days are rare and far between for Big Lake resident Kristi Hellen.
Ive never felt great, Hellen, 38, said. No, I never have great feeling days. Sometimes there would be a period 5 to 30 minutes a day that I would feel good. Now, thats down to just 5 to 10 minutes.
For the past 16 years the mystery surrounding Hellens crippling pain remained that, a mystery. Its been seven months since Big Lake resident Kristi Hellens chronic and crippling Lyme disease diagnosis. Hellen found two treatment options: One was taking a combination of medications, herbs and supplements for two years. The other was stem cell treatment at a clinic in California. Infusio Clinic in Beverly Hills, California, uses a patients own stem cells to help battle the disease. To cover the cost of the $35,350 for stem cell treatment, Hellen and her family have established a YouCaring site to thats raised just over $25,000 to date. Hellen will leave for her treatment Aug. 26. She will return to Big Lake on Sept. 11. (Submitted Photo)
Ive been diagnosed with depression, anxiety, chronic fatigue syndrome and fibromyalgia, Hellen said. Ive been on a few medications, but those would only make me feel like 20 percent better.
It wasnt until about a year ago and with the gentle persistence of a close friend that Hellen would get tested for a disease she feared: Lyme.
Those test results have since given Hellen something she hasnt had for almost two decades: hope.
Growing up in the Elk River and Zimmerman area, Hellen said she would spend a lot of time outdoors in her parents wooded yard.
We also would go to a cabin in Wisconsin, she said. And I would get bit by several ticks every year.
While none of those tick bites resulted in the trademark bullseye rash an early symptom of Lyme disease Hellen said during her teen years she would start getting severe migraine headaches. But it was nothing the avid dancer couldnt handle.
Until college. It was the summer after my freshman year in college, she said. My hands began hurting so much that I couldnt hold a pencil.
Hellen said she began feeling increasingly fatigued. Her back and neck began hurting to the point that she became immobile.
In my early 20s I had to move back home with my parents, she said. I physically was unable to take care of myself.
At that time, Hellen said she could push herself, forcing her body to retain some of her independence.
I so badly wanted to live a normal life, she said.
With the help and encouragement of her parents she started an in-home tutoring business. She even felt she had the strength to start dating.
Thats when I met my husband (Matt), Hellen said.
But dating while in crippling pain had its limitations.
After about five or seven dates I just didnt have enough energy to go out, Hellen said. So, a lot of our dates were him watching me rest.
But even still, Hellen said her then boyfriend stuck by her, eventually marrying her three years ago.
Our relationship is different than most, she said. My husband is a caregiver. And that can be hard at times for both of us. During this time, Hellen began questioning if her original diagnosis was accurate.
Hellen said she had been tested for Lyme disease at one point, but it came back negative. Dr. Glenn Nemec, a family medical practitioner with Stellis Health in Monticello, said that is a common issue with Lyme disease testing.
The tests that are currently out there, the tests that physicians use arent very good, he said. According to the Centers for Disease Control and Prevention those inaccuracies have to do with the length of time between the tick bite and when the testing is done.
The CDC finds that within the first few weeks of contracting Lyme disease, there is a higher likelihood of receiving a false negative on a blood test.
However, a second test, that can be administered approximately four to six weeks after contracting the disease, is likely to produce to clearer answer.
But that negative result Hellen had received wasnt enough to convince a good friend of hers who happens to suffer from chronic Lyme disease to encourage Hellen to get a second opinion.
With the assistance of a Lyme-Literate physician (a doctor who is specifically trained in identifying and treating Lyme disease) Hellens test results came back in November.
She had chronic Lyme disease.
Medicine as a body is not entirely convinced that Lyme disease is a chronic condition, Nemec said. There is some concern that the symptoms patients experience might not entirely be from the Lyme germ. There just isnt enough research out there.
Nemec did say there is a difference from acute Lyme disease and chronic Lyme disease (officially known as Post-treatment Lyme Disease Syndrome).
Nemec said there are three stages for acute Lyme disease.
The first stage, he said, can include the bullseye rash, but also presents symptoms like the flu. Most people will typically get the aches and pains, he said.
Acute Lyme disease can also progress into stage two which Nemec said can last for days or months.
During this stage people again have a lot of aches and pains and very sore muscles, he said. Stage three is when neurological problems can result.
On an average year, Nemec said he treats about a handful of people who test positive for Lyme disease. This year, with the warmer spring and ticks moving around a lot earlier, he anticipates seeing about 10 patients
However, with chronic Lyme disease, the CDC indicates those aches, pains and fatigue will last longer than six months.
Again, we are not entirely sure if that connection is genuine, Nemec said. The CDC indicates the medical communitys uncertainty with the link, adding that persistent symptoms might be a residual effect from the germ, not necessarily caused by Lyme.
But for Hellen, the symptoms aligned with the diagnosis.
When I was diagnosed I felt sad, she said. And then angry. Angry about the fact there isnt more knowledge about Lyme disease so I could have been diagnosed earlier. And now, feeling blessed that this has come to light. Now I finally have some direction as to where to seek treatment.
Its been seven months since Hellens chronic Lyme disease diagnosis.
Seven months of research. Seven months of searching for a treatment program that could give her back her life.
I basically found two options, Hellen said. One would be taking a combination of medications, herbs and supplements for two years. The other was stem cell treatment at a clinic in California.
Infusio Clinic in Beverly Hills, California, uses a patients own stem cells to help battle the disease.
Hellen said the two-week program would first help prepare her body for the treatment through IVs and other therapy methods.
Her stem cells would be harvested from her fat cells and then returned to her body at the end of the two weeks.
After about 100 days, Hellen would return to the clinic for a full assessment.
Ive talked with about 15 to 20 people who have done this type of treatment, Hellen said. Its a shorter recovery time and seems promising.
To cover the cost of the $35,350 for the treatment, Hellen and her family have established a YouCaring site to thats raised just over $25,000 to date.
Hellen will leave for her treatment on Aug. 26. She will return to Big Lake on Sept. 11. Yeah, Im nervous about how I will feel during the treatment, she said. They say the recovery will be tough. But to feel a little worse for a while to get my life back is so worth it.
Hellen has big plans for herself once she can fully walk again she has been bedridden and confined to a wheelchair for several years.
My parents have health issues, she said. My mom has fibromyalgia and my dad was just diagnosed with Stage-4 cancer, she said. So, I want to help them. But the very first thing I want to be able to do is go out on a date with my husband.
With tick season in full swing in Wright and Sherburne counties (considered to be a hot spot for Lyme disease according to Nemec) Hellen cautions all outdoor enthusiasts to be vigilant, especially when it comes to ticks.
If you have any symptoms at all get tested right away, she said. Educate yourself about Lyme disease and protect yourself.
Vicki Ikeogu is a freelance feature and business writer for the Monticello Times.
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Big Lake woman seeks stem cell treatment for chronic Lyme disease - Monticello Times
