Victorious Over Lyme Q & A

Answers to your questions on the Victorious Over Lyme fundraising campaign:

About Lyme

  • What is Lyme disease? (Chronic and Acute)

Lyme disease refers to the presence of the borrelia burgdorfuri bacteria. It was first discovered in Lyme, Conneticut. It is most commonly transferred by a bite from a tick carrying the bacteria. This spiral-shaped bacteria, called a spirochete cork-screws its way into the bloodstream, usually carrying with it other bacteria, viruses and parasites. When treated immediately with antibiotics, the bacteria can be stopped from wreaking havoc on organs, nervous system and elsewhere in the body. Untreated, or not treated long enough it will continue to spread and cause difficulties in musculoskeletal and neurological processes and any organ of the body. See more about Lyme

  • Is it curable?

Once the bacteria has entered the bloodstream, there will always be signs of it. It can be stopped from spreading and held in remission, with symptom free living. Believe in miracles.

  • How big of a problem is this?

A tough question to answer, but numbers are showing the number of people with Lyme in the US are over 300,000 a year. It rivals the epidemic proportions of AIDS in the number people affected.

  • What is the treatment?

When a tick bite is known to have occurred (sometimes accompanied by a bull’s eye rash), acute Lyme is treated quickly, with several weeks of antibiotics. When unknown or otherwise left untreated the path of treatment becomes less clear. Antibiotics are still used to fight the activity of the bacteria, but in much greater and lengthier ways. Intravenous antibiotics are introduced when oral antibiotics are not enough. Herbal supplements are also introduced to help the body cope with all that is happening. Extremely controlled diet aids in the process of stopping the bacteria from feeding on sugars, nutrients and hiding in toxins.

  • How much is treatment? Monthly? Annually?

Of course, each patient will have their own set of costs, but the basic costs of medications, visits with doctors and specialists, blood work labs, and in-home nurse care (for IV patients) is approximately $20,000 per month. That’s $240,00 per year when actively fighting the disease.

About  Victoria:

  • How long has she been sick?

Her symptoms have crept in over many many years. However, a sudden onset of severe illness came up in early 2012 and she has not been “well” since.

  • What are her symptoms?

Severe vertigo/dizziness, abdominal, pelvic, joint, head and ear pain, brain fog and cognitive difficulties, imbalanced hormones, weakness, chronic fatigue, sensitivity to light, sound and motion

  • How did she get diagnosed?

The process was long. After seeing an ENT, the Michigan Ear Institute, and the Chicago Dizziness center, as well as myriad of scans and tests on brain, body and blood, a Lyme disease test was re-evaluated. It said “positive” with “retest negative” (Mayo Clinic Labs Western Blot test). Upon ordering another Western Blot, the result was “indeterminate”. A further test, sent to New York’s Stonybrook Labs also said “indeterminate”, at which point primary physician and patient were both reading “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease” by Dr. Horowitz. To reach a definitive answer, a culture test was done at Advanced Labs in PA, which saw bacteria growth within 4 weeks (they usually wait a full 8 weeks before diagnosing!).

  • How long is treatment? What’s the prognosis?

Victoria has been in treatment since diagnosis in January of 2014. According to most research we have done, patients with this sort of chronic or late-stage Lyme begin to really improve in their third year of treatment (once all factors and co-infections are being treated).

  • Why doesn’t she go to a local doctor?

Actually, she does still see her primary doctor in town. However, as with any condition, a specialist is called for when the primary has reached his or her limits. The doctor we found is in Maryland who has a record of success in treating complicated patient cases with persistent Lyme symptoms. We are looking for treatment options within Michigan that are of the same quality and thoroughness. Most Infectious Disease doctors do no acknowledge that chronic Lyme even exists, or that tests outside of the Mayo Clinic Western Blot are reliable. In searching for a doctor who would treat her at all, we found that the cost of visits would be out of pocket, and probably far away, so we sought out the best we could find.

  • Why can’t she work?

Actually, Victoria still has one of her previous 6 jobs. She could no longer serve in the restaurant, aid kids with disabilities in the school, clean houses, manage a website, or regularly proofread audio books, but she still strives to work from home as a small part of the Church Division of CLC Network. Medicine side effects, symptoms themselves, and the effect of die-off as the medications actually work cause “crashes” in which basic functioning can be difficult, not to mention trying to parent her kids and keep up her house or cook a meal. So many days, work is simply not going to get done.

  • Is there a church supporting their family?

Yes and no. While unable to regularly attend a church anymore, Victoria and her family often “attend” church online. A team of friends and family used the model of “Share the Care” (see ShareThe Care.org) to provide support with a regular weekly schedule, and has worked on fundraising, child-care, meals, rides (Victoria is not able to drive), and many other integral ways of supporting the family’s physical, spiritual and other needs.

About the fundraiser and the funds:

  • Who to make the check out to?  Victory Over Lyme
  • Does she get all the money that is donated?

Pretty Much. 3% goes into the cost of running the online donation web service. The rest goes right to her treatment!

  • Where does the funding go?

The online web service deposits the funds into the DBA account from which Victoria can directly pay doctor’s bills, medication costs, etc.

  • Why doesn’t insurance cover the costs?

The treatment of Lyme, especially chronic or late-stage, is often not recognized by the American Medical Association, and therefore many doctors and insurance companies. Victoria’s insurance has been very good thus far, covering nursing costs, antibiotics, many labs and scans and other tests, but not doctor’s visits to the specialist, or any of the more “alternative” or herbal elements of treatment that make it survivable. (Would you take 6 or more antibiotics for years without some serious probiotics??) With blood levels that are monitored closely, many supplements and compounding pharmacy treatments are added in order for her body to withstand the antibiotics and the disease.

  • What does insurance do?

Insurance, once the $6,000 deductible is met for the year, covers the IV antibiotics, the nurse and infusion service, CT scans, X-rays, and many bloodwork labs, though not all. It covers visits with the primary physician, and a good part of the other doctors and specialists Victoria sees (Ophthalmologist, ENT, etc.) as well as those fun ER visits when something gets scary.

  • Is there a way to donate anonymously?

Yes. When you donate online, you can disclose or leave out amounts, and names.

  • Is this fund a registered DBA?

Yes. It is registered with Ottawa County as Victory Over Lyme, with signers: Thomas Aitken, Sarah Aitken and Victoria White

About the artwork

  • How is the art related?

TJ Aitken donated the entire body of works called The Overheads to the fundraiser for Victoria. As her dad, he wanted to use the art for the purpose of helping her. Also, the theme of the Overheads is “What’s in Your Worship?”  in which concepts relating to our priorities are explored. Like Lyme disease drains away health in a body, so modern idolatry drains away health in the spirit. Lyme, like sin, is insidious and everywhere, and will not stop on it’s own. We have to fight it, and to do that we have to first be aware of it and identify it.

  • The Overheads Series is about “What’s in Your Worship?” what might a church, seminary or school  do with this body of works?

The series has been featured in sermons, presentations and exhibited as a spiritual journey. A church may wish to use pieces and media from the series to discuss with the congregation or a group what is in their worship. Seminaries may wish to explore the topic of this multimedia experience with students. Schools and other groups can use the book, themes and pieces to explore the topic and even create their own “overheads”. Tj can present for local churches, seminaries, schools and groups. See more about Tj’s work.

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