Victoria's Chronic Lyme Treatment

18 years ago, at the age of 12, Victoria was getting ready for school when she felt what she thought was a spider on her neck. She plucked the “spider” off of her skin and continued on with her day, not giving it a second thought. A few months later, Victoria started getting joint pain symptoms. As the months went on, she was constantly getting sick. Victoria began to wonder what was going on with her body so she started making doctor’s appointments, yet no doctor was able to give her any answers or direction as to what this might be.

    By the time she reached high school, Victoria’s joint pain was excruciating and constant. She was also having concentration issues and she was always exhausted. However, the only diagnoses given by her doctors were carpletunel and hardened cartilage in her knees. Victoria was certain there was something more going on, but she trusted the doctors to give her the correct medical advice. After all, the results of various blood tests all came back normal.

    A few years later, when she was in her early 20’s, Victoria was diagnosed with Fibromyalgia. For over a year, she was taking up to 15 different medications and supplements for Fibromyalgia, but nothing ever helped. Her doctor told her she had anxiety and depression that was causing her to hallucinate and she was prescribed Xanax and Prozac. Victoria followed the doctor’s advice, but her symptoms progressively became worse. Her joint pain was becoming unbearable and her fatigue was causing her to fall asleep at work. She would also collapse in public and not be able to get up. This was all beyond embarrassing and confusing for Victoria. What was happening to her? Why wasn’t she getting better if she was following what the doctor told her? Will this get worse? How can she keep her job? Victoria was afraid to go out in public because she was frightened of collapsing again.

    After witnessing Victoria battle with her health for nearly 20 years, Victoria’s cousin, Jackie, suggested getting tested for Lyme Disease. She knew someone who was diagnosed with Lyme years prior and her symptoms matched her cousin’s. Victoria finally asked her doctor about the Lyme Western Blot test and upon completing it, she was missing just one band to confirm Lyme disease. Her doctor told her she did not have it, but Victoria refused to believe this. She did research and spoke to people that suffered from the same horrific disease to see how they finally found out if they were positive and how they got through it.

    Patricia Cucolo, a good friend of Victoria’s, told her about an “affordable” doctor, however, he wasn’t the best of the best. Victoria reached out to Dr. Steven Streit M.D, a Lyme specialist in Howell, New Jersey and he did a more extensive blood test through Igenex in California. This test came up positive for Lyme, Candida, and a co-infection called Bartonella. Victoria started treatment immediately, just a few days before her 30th birthday.

    Victoria was relieved to finally have a real diagnosis, but since this disease is typically not recognized, she would of been better off being diagnosed with cancer, since that is at least covered by her insurance. As treatment started, so did her Herxheimer reaction symptoms. A Herxheimer reaction, or “Herx” is when the Lyme bacteria is being killed off inside the body and it produces toxins that basically poison your body. A patient with Lyme Disease begins “herxing” when the treatment is starting to work. Although herxing is a good sign, it makes the body feel worse because all of the symptoms that are already debilitating get worse for a period of time.

    Here is the main misconception with Lyme Disease: many people think, “It’s no big deal. You just go to the doctor and get antibiotics and you’ll be fine in a month.” If someone has just been infected with Lyme disease, that statement could be true. However, Victoria has been misdiagnosed and Lyme symptomatic for 18 years! That means the disease has been in her body, untreated, for nearly 20 years. This has given the disease time to attack Victoria’s vital organs, including her heart, brain, and kidneys, and do some irreversible damage.

    Now, let’s talk about treatment. Chronic Late Stage Lyme Disease, or Lyme Disease that has been active in the body for a long period of time, is not recognized or covered by any health insurance. Therefore, Victoria has to pay for her entire treatment out of pocket. The doctor that was recommended to Victoria for Lyme treatment cost $1,500 per visit, and she needs to go once a month. Also, not all of her medications are covered by her insurance, and she needs to be on certain medications for months at a time. Her doctor is recommending she get a Rife machine for extended treatment at home to help kill Lyme bacteria. This machine costs $6,000. She needs to start additional treatment in New York City, which will cost over $80 a visit and she needs to go 3-4 times weekly. There are also numerous over the counter supplements that she needs to take daily that add up in cost. Obviously, no one in the middle class could afford this treatment. What makes this treatment even more impossible for Victoria is the fact that she is physically unable to work full time hours, which means her paychecks have decreased significantly. And, since Chronic Lyme is not recognised by the CDC, Victoria cannot apply for disability.

    Victoria needs help. Her doctor is telling her she has a long recovery and that she will get worse before she gets better. She has been suffering for so many years and is currently plagued by daily chronic pain in her joints and muscles, along with muscle spasms, chronic fatigue, heart murmur, memory loss, difficulty concentrating, vision problems, numbness and circulation issues, nerve issues, numbness in face and limbs, and so much more. This journey is only going to magnify these symptoms and make them much much worse before she is able to feel better.

    Even now, when she finally received the correct diagnosis, she will still suffer because she cannot afford the full treatment recommended to beat this. We are trying to make people more aware of what Chronic Lyme Disease is and how horrible it is for those who suffer with it. It can be extremely fatal if left untreated. Not only is it a debilitating disease that affects your entire life, the treatment is basically impossible if you’re not a millionaire.

    No one should have to suffer like this. All donations will help her get the treatment needed to get her healthy and into remission. It will allow her to: see the best of the best doctors in Connecticut, be able to afford high amount of live probiotics weekly, her Rife machine, and Hulda Clark zapper, as well as affording to keep up with a weekly cost of detox products and services.

    Below are several links that might open your eyes to what my cousin and many others are suffering from:

https://www.medicalbillgurus.com/2017/09/why-isnt-lyme-disease-covered-by-insurance/
https://www.healthline.com/health/lyme-disease-chronic-persistent
https://www.healthline.com/health/lyme-disease-chronic-persistent#RiskFactors3
https://www.youtube.com/watch?v=sxWgS0XLVqw
https://www.youtube.com/watch?v=RlvDVTKbNMQ
https://www.youtube.com/watch?v=40kzRSSPIxE
http://www.tiredoflyme.com/detox-methods.html
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Organizer and beneficiary

Jackie Cali 
Organizer
Little Falls, NJ
Victoria Romaniello 
Beneficiary
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