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For those of you who know Julianne, you know of her infectious energy that she pours into everything she does and everything she creates. Her heart is big, but even more importantly, she fights for what is right.
For the past 2 1/2 years, Julianne has had that energy stolen from her little by little. After the infection remained hidden for an unknown amount of time, she tested positive for Lymes disease in April of 2020. One round of oral antibiotics left her more sick than before, so she underwent IV antibiotic treatment daily for another month. She was so hopeful of the success, and attempted to resume life again and find healing, only to find herself more ill than she has ever been before. New symptoms began, but her doctors were confused as test after test came back normal.
In December 2020, some of the symptoms couldn't be ignored anymore as seizures and alternating numbness and pain in her spine and legs became an everyday battle. Confusion and memory loss come and go and have increased in frequency. Some days her pain is unbearable where other days she doesn't have enough muscle control to sit up. The neurologist recently noted that even the reflexes on the right side of her body are now delayed. Most normal daily routines have become impossible and the seizure medication is no longer keeping up.
And still, the tests kept coming back Normal, leaving her doctors without much direction to head in and her without much hope for help.
The most recent tests showed an activation of normally dormant viruses in our bodies that her current doctor believes is a result of her weakened immune state post Lyme treatment. Her bloodwork showed us that she has an especially virulent strain of Epstein barr virus that is active and off the charts high in her blood right now as well as possible HHV-6 activation. These viruses seem to be targeting nerve endings and causing swelling in her brain and spinal column.
It was a relief to get answers, but due to the nature of these viruses, treatment is limited. There was a lot of discussion of "trying this to see if it helps", and we are grateful for even a little help for her, but its just not enough. We want an agressive approach instead of allowing it to progress into uncurable, lifelong illnesses as her current doctor suggested was likely.
After much research, we believe her best chance of treatment and recovery is out of our state, unfortunately. Doctors here have also agreed and wondered why we haven't tried out of state facilities yet. A fact that is sad (and one I'm sure Julianne will want to come back to fight for when she is well!) I recognize many wonderful hospitals and treatment facilities in West Virginia and elsewhere, but there are few who are experienced with this type of viral response post-Lyme Treatment. For that reason, we have chosen to begin treatment at Envita Medical Center in Scottsdale, AZ. She is now enrolled as a patient after they helped walk us through suggestions and options for the past 2 months already. Their patient care team were the first to speak hope and urgency into her case.
And so, we are needing funding for the treatment plan that Envita is personalizing for her. They are compiling all of the testing already completed with their own advanced testing to come up with the combination of medicines and integrative medical treatment that will give her the best chance at recovery of neurological and physical function.
I know the diagnostic and treatment expenses are a big ask to contribute to, but it equates to as much as or less than any of the hospital treatment facilities for someone whose insurance is not accepted by the out of state hospitals and who is not eligible for new insurance due to this pre-existing condition. Unfortunately, we face the same battle no matter where we go.
Please consider donating anything you can or feel led to give to help with her treatments. If you feel more comfortable donating directly to the medical Center, those arrangements can be made as well. Her payments will be due on a monthly basis. The treatment will last 8 weeks, with daily treatments needed, and will begin March 1st.
Thankyou for caring for and supporting Julianne!
For further information, please check out
....or send me (Beth Goodlet [email redacted]) a message! I have spent the last 2 months gaining as much information as I can and I would be happy to share what I have learned from her care team.