Urgent Neurological Lyme Disease Treatment

Hi! My name is Kiana and I am a 22 year old college student studying pre-clinical sciences with a focus on pre-medicine, as well as a double major in neuroscience. It would mean the world to me if you take the time to read my medical journey, as I am in a difficult position due to the caliber of my illness.

 

In 2017 is when my health began to decline. I was vomiting every day consecutively for 28 days straight, multiple times of the day; I was weighing 110lbs then I dropped to 85 pounds within days because I could not keep food or water down. I was experiencing extreme panic attacks that would last for 12 hours. I had to be given heavy sedatives in order to keep my nervous system calm. I spent most of my time going to the ER at least 3x a week and eventually was hospitalized for close to a month.

 

Nobody could figure out what this “mystery” illness was because all the tests and labs came back normal. Since 2017-2020 I had been on so many pharmaceutical prescriptions that most people will never get in a lifetime - this in itself speaks volumes on how difficult it was to diagnosis.

 

I was referred to a Lyme literate physician and she ordered a massive blood panel, as well as other tests to be done. I was CDC positive for an active infection. I immediately started treatment. My brain was inflamed, my nervous system was damaged, my organs were at their limit and my heart was a causing concern for Lyme carditis; which meant potential cardiac arrest because my resting heart rate would be in the 120s.

 

Unfortunately, getting the proper treatment that I need is very costly. I have to get medical IVs at least 3x a week and IV infusions with medications; each week I have to pay close to around $270 per IV (nutrient bag, lactated ringer, glutathione and taurine). Furthermore, my supplements are also paid out of pocket and those are close to $1,200 a month.

 

My team of physicians have made the decision to refer me to one of the best functional neurologists in the United States to be able to address certain aspects of my damaged nervous system and brain. The referral for this functional neurologist was made by my team of physicians because they have exhausted all treatment options thus far. We are at a point that I have to take heavy medications and high does sedatives on a daily basis. My invisible illness is masked with medications in order for me to somewhat be functional on a day to day basis and not be bound to a hospital bed. This is a very deliberating disease and very complex. The only way I can properly deep dive into intensive care is by going to the functional neurologist as he does neurological rehabilitation for the brain and nervous system. He addresses neuro inflammation, neurological disorders, as well as how to treat them through various treatments.

Since my case is a very critical one and so complex, I am a candidate for his treatment. He was optimistic about addressing the damaged neuro tissue that lyme has destroyed, addressing the neuro inflammation throughout my nervous system and especially my brain, as well as targeting the misfiring of neurotransmitters while focusing on the vestibular part of my brain and the brain stem. His goal is to heal me through intensive treatment, meaning that I go to his neurological rehabilitation for two weeks 9am-5pm being worked on. Furthermore, after the intensive, weekly follow ups for diagnostic testing and being able to see what has changed and what needs to be treated. With all of this said, the treatment will cost an estimate of $25,000 out of pocket. He does not accept any insurance and cash is the preferred. This treatment is very expensive, but this could completely save my life and start healing my nervous system in ways that some of the top physicians that have tried to take on my case were not able to. 

 

It would mean the world to me if you could find it in your heart to take the time to share my story with others and if you have the financial means, any donations would be appreciated because it would allow me to receive this specialized treatment and hopefully feel better and get off these pharmaceuticals. Every little bit counts.

 

Please share and donate if you can, I really need this treatment but since insurance does not cover treatments for Lyme disease, we have paid everything out of pocket. As a college student, I do not have that much to be able to pay on my own. My family is already dealing with my other massive racks of medical bills and I wanted to take the pressure off of them, although they are committed to my health and will support me as best as they can. 

My goal is to become a physician within this field to help those who are struggling with this chronic illness and not let them suffer for ongoing years. Every donation is a step for me healing myself first before I can heal others who have similarly walked in my shoes. 

 

Thank you for reading to my story and I hope that it brings light and encourages others to keep fighting their own battles and to never give up advocating for their health. 

 

Kiana Lotfollahzadeh