Lisa Basalto, a 2007 alumna of Sonoma State University, has had to give up her job as a webmaster due to a series of complicated medical issues that began in 2014. They started as neurological problems and developed into pain, fatigue, cognitive issues, and, most recently, collapsing episodes. As a result, Lisa has had to abandon all work, hobbies and household responsibilities because, as she says, "I have no strength left or my tremors are too bad to hold anything." Her complete statement appears at the bottom of this message. Lisa's employer, B'nai Israel Jewish Center in Petaluma, CA, organized this fundraiser. Not only is Lisa a valued part of our organization, but because the place she should be receiving help from – the Social Security Administration – is not helping her.
In a recent Facebook post, Lisa wrote:
As my body continues to deteriorate, I have moments where I feel like a complete failure, and I had a bit of a meltdown earlier this week. I can’t always keep up with all aspects of my life. I started researching options to keep in mind in the future, and came upon a startling fact: the Social Security Administration has a specific list of health conditions or symptoms that they use to determine if someone is “qualified” to be deemed disabled and to receive monetary support for it. According to SSA, I am NOT disabled. What. The. Hell.
Lisa's health insurance premium is $450 a month. This Gofundme hopes to pay that bill for the next year - and a bit more, and take a significant source of stress out of Lisa's life. Thank you so much for your support.
Rabbi Ted Feldman
In the spring of 2014, I started having neurological problems.
They presented similarly to a grand mal seizure, but I did not lose consciousness or awareness during the episodes. Episodes increased in frequency, happening near-daily throughout the course of 2014 and lasting anywhere from a few minutes to several hours without medical intervention. The episodes were difficult to diagnose as I had no prior health problems of any kind, and no family history of these types of episodes. It took about eight months of testing, including CT scans, MRIs, and EEGs, to determine that these episodes weren’t epileptic in nature, but no cause could be determined. I was given the diagnosis of essential myoclonus, with no underlying cause known at that time.
In the course of testing for the cause of the myoclonus, an MRI discovered that there was a growth on my pituitary gland. I had surgery to remove this growth in December 2014, and it was determined to be a non-cancerous, benign adenoma. However, all of my doctors agreed that this tumor was not likely to be the cause of my neurological symptoms as pituitary adenomas are not known to cause movement disorders of any kind. We continued to search for a potential cause for these episodes.
In the spring of 2015, I started noticing that I was having a hard time concentrating and began feeling like my brain was in a thick fog when I would try to do any task that required focus. At the same time, I also started feeling exhausted all the time, and soon after I started experiencing pain all over my body. The pain and the exhaustion together made me feel like I had a severe case of flu, with the pain similar to fever aches. My doctors ran a number of blood tests and other tests for causes like rheumatoid arthritis, but these all came back negative. I was diagnosed with fibromyalgia and chronic fatigue syndrome, also known as myalgic encephalomyelitis (CFS/ME). These pain, fatigue, cognitive, and neurological issues tend to come and go in waves, with any kind of exertion (physical or mental) having the potential to trigger “flares.”
In 2016 the adenoma on my pituitary gland recurred, and after monitoring its growth for a year we repeated neurosurgery in July 2017. While it is not believed that this is the cause for my other health problems, because the tumor has a history of recurrence, my pituitary has to be monitored with an MRI annually for the rest of my life. If the tumor were to recur again without medical intervention, this type of tumor can grow and dislodge the optic nerve, causing blindness, as well as other potential complications like Cushing’s disease.
In the summer of 2019, I began collapsing without warning. While the myoclonus episodes would cause my muscles to convulse, with these episodes I would fall and be unable to move, sometimes only briefly and sometimes for five to ten minutes. This was initially believed to be an example of “negative myoclonus” (with the twitching and convulsions being “positive myoclonus”), but in summer 2021 I was diagnosed with postural orthostatic tachycardia syndrome (POTS), a type of dysautomia that is a common comorbidity with CFS/ME and fibromyalgia. This causes episodes of “fainting” due to changes in blood pressure when a person changes from lying down to sitting or standing, or can even occur when a person has been upright for a while due to the body releasing incorrect levels of epinephrine into the bloodstream.
It was also in summer 2021 that I finally spoke with a specialist who gave me a plausible underlying cause for all these symptoms and syndromes. Epstein-Barr virus, which is the virus that causes mononucleosis, is a disease that has affected 90 to 95 percent of the adult population of the planet. Typically, a person will get infected, their body will fight off the infection, and that will be that. But EBV remains in your body, with your immune system suppressing it, forever, and in rare cases the virus will reactivate. In some rare cases, your immune system will not recognize the reactivated virus and you will experience mono-like symptoms (such as the fatigue and fever-like pains) even though you’re not actively sick with mono.
EBV is linked to a number of the syndromes that I have been diagnosed with, such as CFS/ME, fibromyalgia, and POTS, as well as neurological problems like the myoclonus episodes I have been experiencing. The current best guess of my doctors is that I am one of the rare cases who are experiencing “long EBV,” analogous to the cases of “long COVID” that have occurred since the pandemic began (another virus which seems to be leading to issues like CFS/ME, fibromyalgia, and POTS). Unfortunately, there is currently not a verifiable testing method or treatment for this diagnosis. It simply explains why, but does nothing to help fix the problem.
In the meantime, I have been in a severe flare period since late 2020. Stress is a known exacerbator of pretty much everything—causing recurrent EBV episodes as well as triggering CFS/ME, fibro pain flares, POTS flares, and episodes of brain fog—and the stress not only of the pandemic, but of local wildfires that impacted my community and threatened my home, a historic ice storm that damaged my home and left me without power for eight days, and health scares within my immediate family, contributed to my deteriorating health. At this point I have found myself unable to work, not qualifying for disability assistance due to the largely speculative nature of all of my health problems, facing overwhelming medical bills, and very tired and worn down by the whole situation. I have been trying very hard to keep everything together, but my health has just gotten too run down. I truly appreciate Rabbi Ted’s extremely generous offer of assistance, and I am also incredibly grateful for the generosity of everyone at B’nai Israel Jewish Center. Being a part of this community as your webmaster for the last fourteen years has been a wonderful experience, and I am very appreciative. — Lisa Basalto