Nikki Ulisse Layton's Lyme Battle

My sister, Nikki Ulisse Layton, was diagnosed with a horrible disease called Lyme in 2014.   She was misdiagnosed for about seven years prior to that when she had symptoms that included severe bladder pain and muscle wasting (atrophy), severe fatigue, stiffening of her joints, and blurry vision.    Since the Lyme went untreated for over 7 years,  she is now in late stage Lyme.   Nikki was untreated  for so long, the bacteria has  breached her blood brain barrier, which grossly effects her nervous system.    Nikki also has Sixth Nerve Palsy (double vision) in both eyes that can not be stabilized.  This advanced stage Lyme will ultimately leave her blind.   Her liver enzymes are high and her white blood cell counts are low, due to the very high inflammation in her body.   Additionally, her immune system is not stable, and she could be facing organ failure.  This devastating disease has already triggered an autoimmune response which has caused her to have Epstein Barr virus, as well as high levels of mold and lead in her blood.

In May, Nikki's  Lyme Literate MD (LLMD) doctor, whom specializes in the treatment of Lyme  disease and coinfections from Lyme, became very optimistic that if they could immediately get her on intravenous antibiotics, they could get her into remission.  The  intravenous antibiotic treatment plan that she needs to be on must be administered st least six months in order to penetrate the blood brain barrier.  Oral antibiotics will not work (she has been on these for the last three years).   However, the insurance company would only approve 30 days of this treatment.  She had a port surgically placed in her chest  to receive the treatment,  hoping the insurance company would allow for more than the 30 days.  Subsequently, the insurance company would not reverse their decision.   Nikki and her husband, Bill have appealed the decision twice, but the insurance company has denied any further coverage.  Her LLMD also appealed on her behalf, with no success.   So, she now has medical bills that were not covered since June and any further necessary treatment will also not be covered.  She needs to stay on the medication until November in order for the antibiotic regimen to work.
Nikki has been fighting for her life, and if she cannot continue this aggressive treatment, she will not survive.

Nikki and her husband have been struggling to pay out-of-pocket medical bills for the last 2 years (which have escalated to over $40,000),  and they no longer have the means to pay for continued treatment.  The out of pocket cost for these antibiotics is roughly $2000-$2500 per month, the nurse which has to go to Nikki's home to access the port once a week is $90 per visit, as well as blood work which is not covered and several autoimmune supplements costing $350,  not to mention the doctor visits,  which are very necessary.  Nikki is in dire need of these antibiotics for at least 6 months
At this point, they have exhausted every avenue available and this is my attempt to save her.  

This terrifying disease is a dragon which raises its head and causes horrible and crippling symptoms.  It confounds me that a person with cancer can get Chemo, but a person with Lyme, has to fight to stay alive!  Ultimately, this Nikki's fight for life.

Thank you for considering donating to my sister's cause.
Tami Ulisse Forrest

For more information on this disease, please go to www.lymedisease.org

Donations

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  • Sam and Lisa Margolin 
    • $200 
    • 36 mos
  • Tammi & Alex Pinckney  
    • $200 
    • 38 mos
  • Della Hodsden 
    • $100 
    • 39 mos
  • Susan Messick 
    • $50 
    • 39 mos
  • Les Capouya  
    • $36 
    • 40 mos
See all

Organizer and beneficiary

Tami Ulisse Forrest 
Organizer
Poquoson, VA
Nikki Ulisse Layton 
Beneficiary
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