Monday, August 15, 2022

Comments by LJM

Showing 3 of 3 comments.

  • It’s so very kind and thoughtful of you to read and reply to all of the comments on this message board; one rarely sees that.

    John 1:5: The light shines in the darkness, and the darkness has not overcome it.

    You and your family are a light in this world that oftentimes feels overwhelmingly dark. What a blessing that light always ultimately overcomes darkness…Thank you so much, Russell.

  • Carol and Russell, Thank you so much for courageously sharing the story of the hell you went through trying to get your beautiful daughter the help she deserved; you turned to the “professionals” when you were desperate to help Catherine, and instead of helping her, they destroyed her life. I know you did all you possibly could to help her. It’s through stories like yours that the system will hopefully begin to change.

    We went through a similar situation with our son; Elijah had a joy-filled, stable life as a youngster, but when time puberty hit, he abruptly began showing signs that he was distressed. He withdrew from people, began cutting himself periodically, couldn’t sleep, developed OCD, and had significant anxiety and depression as well as marked paranoia.

    After a year or so of those symptoms, he began speaking nonsensically–he went from winning poetry contests as a freshman in high school to being unable to write a cohesive college essay. My husband and I were concerned that he was showing signs of schizophrenia. His psychiatric nurse practitioner put him on 25 mg of Seroquel with the hopes that some of his symptoms would improve and that he would sleep. The Seroquel helped him sleep, which stabilized him to some degree, but he still struggled. Elijah didn’t like the way even the low dose of Seroquel made him feel, so he stopped it after 9 months.

    He went through college while living at home, and at 20, he had the opportunity to get his PhD in a different state. The first few months went okay, but on the cusp of his 21st birthday, his fellow, much older PhD students suggested he try different kinds of alcohol to see what he liked best. He got drunk and tried jumping off an apartment balcony. The police were called, and he was committed to a psychiatric hospital for a week. He wasn’t really helped during his stay, but he left on a SSRI, and we hoped things would get better. (He had been on different SSRI’s through the years, but they did absolutely nothing to alleviate his symptoms, so eventually he stopped taking them.) In addition to the symptoms he’d had for years, Elijah was starting to have wild mood swings and extremely angry rages. Unfortunately his mentors asked him to leave his PhD program, and he returned home.

    He continued having terrible insomnia, marked anxiety, depression, rages, mood swings, paranoia and OCD. We thought he might have Bipolar disorder, but his symptoms weren’t completely consistent with Bipolar, so he was ultimately diagnosed with Borderline Personality Disorder (an awful term– a person’s personality is the core of who he/she is, so to be told his personality was terribly broken was devastating). He socially withdrew even further and began pushing everyone away. He would spend 24 hours in our basement reading hundreds of books (he even read the dictionary).

    One day Elijah found a “bulls-eye” rash on his trunk which led to testing for tick-borne diseases. He was diagnosed with probable Lyme and certain Bartonella. We found an amazing Lyme literate infectious disease doctor as well as a terrific naturopath who put him on two different antibiotics as well as various supplements to support his immune system and his gut. We believe Elijah was exposed to Bartonella at the age of 12 when we took a feral cat into our home, and we believe he had a PANDAS-type inflammatory response which led to some of his symptoms. Bartonella and Lyme can cause a whole slew of neuropsychiatric symptoms, including terrible rages (there has even been a confirmed case of a teen who had been diagnosed and treated for schizophrenia, when he actually was suffering from Bartonella; after antibiotic therapy, his symptoms completely resolved).

    At the time Elijah started his Lyme and Bartonella treatment, he was engaging in virtual group mentalization therapy with other people who had been diagnosed with Borderline. It was led by an “accomplished” psychiatrist who scoffed when I suggested that Elijah’s initial rapid decline might have actually been the result of infections that caused inflammation in his brain. A Lyme literate psychiatrist, Dr Brian Fallon, looked at Danish registries from 1994-2016 which included almost 7 million people, 12,156 of whom had received the diagnosis of Lyme Disease. Rates of mental disorders, affective (mood) disorders, suicide attempts and death by suicide were examined. His research group found that in those with Lyme Disease, there was a 28% higher incidence of mental disorders, a 42% higher rate of affective disorders, twice the likelihood to attempt suicide, and a 75% higher rate of suicide compared to people without Lyme. The data also illustrated that Lyme-infected individuals aged 19 and younger had significantly higher rates of neuropsychiatric disorders than those without Lyme infection.

    After spending 13 months on the antibiotics, Elijah has not completely recovered, but he is doing much better! His rages are gone, and he is much more stable. If only more psychiatrists were open to looking at their patients’ complete medical histories, and if only they did more thorough testing, I believe more people looking to psychiatry could be helped. Thankfully it seems as though there are some doctors out there (especially functional psychiatrists) who are willing and able to “think outside the box.”

    Thank you again for sharing your story, Carol and Russell; I know that some day you will be reunited with Catherine in eternity. It’s so difficult to live in this broken world, but thankfully we know the One who understands our pain, as He’s felt it too. I know He’s walking with you, and I’m praying that you feel His presence.