Fred needs help for Medical Treatment
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If you know Fred, I don't have to tell you that they are one of the kindest, strongest, most generous, hardworking and compassionate people we know. They have a huge heart and a wicked mind. They are a queer, trans-masc, non-binary, autistic, joyful and serious being; who, even in the hardest of times, can get a good laugh in. For 25+ years, they have been living with an illness misdiagnosed as fibromyalgia, now known to be Lyme (known in the community as Chronic Lyme/PTLD or long-Lyme) with co-infections Bartonella and Babesia. They have Mast Cell Activation Syndrome (MCAS), Asthma, they have had COVID 3 times and now manage long COVID symptoms. Additionally, Fred just received the results of an MRI on their brain displaying currently inconclusive indications of either cancerous growth, inflammation or the presence of infection, or MS. Right now, Fred critically needs our help to survive.
As is common with a chronic undiagnosed illness/disability, without an official medical diagnosis and therefore no access to support, Fred had no choice but to become their own primary caregiver. For decades they have done everything they possibly could to research, assess, troubleshoot, diagnose, and manage their multiple illnesses. They have worked their ass off to survive while being sick in order to pay for all the tests and treatments. Their enormous effort towards their own care brought them close to remission with Lyme, but then COVID emerged and upended their progress. Old and unmanageable Lyme symptoms flared, and new and enduring long COVID symptoms arrived.
Fred’s access to healing and recovery relies largely on the success of this campaign. Please help us raise $75,000+ to help Fred. Every dollar makes a difference and is much appreciated. Fred needs our help to heal, recover financially, and create a sustainable and necessary change in their life.
The Funds will be used for:
Paying off medical debt from the last 2 years/2 recent health-related moves
Help with living expenses–debt incurred during the last 6 months while living on reduced income due to illness and surgery and up to one year of basic living expenses to take the time they need to recover
Upcoming medical and therapeutic practitioner fees, tests, and ongoing treatments + medicine not covered by OHIP here in Toronto
Access to testing through privately operated Armin Labs (Germany) or IGeneX Lab (California) for Lyme and co-infections to better be able to target treatment
Private treatment from Lyme Literate MD in Toronto or Internationally (long term antibiotics,appoinemnt costs, travel etc.)
Vitamin injections to supplement Fred’s extremely restricted diet
Support time to figure out possible next steps for employment and education/re-training supports if they are unable to return to their fields of employment due to MCAS.
Other ways to donate and support
Send an e-transfer: hotfredica AT gmail.com
Send a care package from their amazon wishlist: https://www.amazon.ca/hz/wishlist/ls/2I7G427TGFRIM?ref_=wl_share
Shop for rad art + clothing on the Kane website where the profits from any and all sales go to the campaign. All work created by amazing graffiti artist who is also Fred's brother. https://kaneism.com/fundraiser-for-fred/
Being resilient is hard work. Fred is tired and needs our care, in ways they have never asked for before.
Fred exists now in this liminal space of inconsistently having their illnesses recognized or diagnosed by the Canadian healthcare system. They are without access to the care and support they need to get better. This is how they got here:
In 2015, Fred left cooking in the restaurant world to chef at a daycare. Within weeks their health took a significant turn and progressively got worse over the next few years. During this time they were diagnosed with Asthma, developed serious allergies, had multiple sinus infections and intestinal parasites, experienced skin infections, rashes, hives, extreme fatigue and body pain, severe weight loss, neurological issues, brain inflammation, and more. Their allopathic doctor and the medical system was unhelpful, all tests were “normal”. It is critical to underscore the impact of years of navigating the Medical Industrial Complex (MIC) and allopathic medicine systems that gaslit, undermined, confused, isolated, and ultimately, denied Fred care.
It is a testament to Fred’s will that they endured the waiting lists and referrals, the slew of specialists and new doctors, the inconclusive tests and medical gaslighting, all with exhaustive self-advocacy. Fred had been progressively getting sicker as the MIC continued to deny and ignore the reality or presence of illness and symptoms. In addition to withholding care, this has been ultimately traumatizing for Fred, causing enormous and lasting emotional and psychological distress.
In 2018 Fred’s naturopath suggested Lyme Disease. Fred had been tested a couple of times in Ontario, with negative results. Fred was clearly extremely sick and had no answers so they sent their blood to a lab in Germany to be tested for Lyme Disease and co-infections. Finally, they had definitive results: They tested positive for Lyme with several other co-infections. Fred’s doctor would not recognize the results and Canadian medicine does not uphold that chronic Lyme exists. No new allopathic treatment options became available.
Fred was referred to and began working with a Lyme Literate Naturopathic Doctor (LLND) to start treatment with herbal protocols, supplementation, immune support, a progressively restricted diet, and more private tests and treatments–entirely paid for by Fred–for years. Their unyielding commitment to their health alongside a brigade of allopathic doctors who triaged some acute symptoms with steroids, antihistamines, antacids, etc. did begin to mitigate the Lyme and MCAS and they were on track to remission until COVID arrived in March of 2020.
Fred contracted COVID for the first time in June 2020. They were acutely sick for 3 months. New symptoms emerged and their preexisting conditions worsened, alongside major effects on their mental health. In September 2020, they had to move unexpectedly. It was then they discovered that their workplace of 5 years was full of mold. This is unofficially a major trigger for Lyme, MCAS, Asthma, and the progression of immune system breakdown. The harm caused to their brain and immune system on account of the mold exposure now results in multisystemic reactions to the tiniest amounts of mold, scents, chemicals, pets, smoke, temperature, food and more. In December 2021 they contracted COVID for a second time, and more recently in September a third time. Severe long COVID symptoms remain and exasperate their Lyme and MCAS symptoms. They have recently received an MRI that indicates the presence of something in their midbrain; the possibilities are a tumor/cancer, MS, or fungus/infection (consistent with experiences of Lyme and/or COVID).
Fred has been on unpaid medical leave from work since April for major surgery unrelated to Lyme and has been recovering at home with a possible return date in the spring, health permitting. They received the maximum of 15 weeks of Disability Insurance Benefits from the government which ended in mid-August 2022. Their doctors have recommended that they extend their leave to avoid all possible immune triggers (touching food, breathing in food vapours, chemicals, smoke, mold, stress, etc.). To continue to survive without working Fred needs support.
They have been denied EI (Employment Insurance) and do not qualify for ODSP/long-term Disability at this point. Fred needs help now. The reality is even with EI or Disability Benefits, these alone do not cover Fred’s basic cost of living and medical care, as most of the treatments for Fred’s complex medical needs are not covered by OHIP (Ontario Health Insurance Plan).
Fred’s illnesses are ongoing, dynamic and unpredictable; some symptoms include:
Neuropsychiatric presentations extreme depression + anxiety, and suicidality
Sudden-onset aggressiveness and anger/overwhelm/sadness - these symptoms may be more common in people with concomitant Lyme disease and the co-infection Bartonella
Cognitive dysfunction and brain fog/profound confusion/memory loss
Neurodegeneration – Borrelia burgdorferi has been detected in the brains of individuals dying from Alzheimer’s disease11
Insomnia and sleep disturbances
Neuropathy, particularly numbness, buzzing, and tingling that comes and goes or moves around the body
Headaches, Blurred vision, Hallucinations
Cardiovascular complications, POTS (Postural Tachycardia Syndrome)
Chronic fatigue,
Migratory joint, muscle, and nerve pain, twitches, muscle spasms
Bell’s Palsy
Multi-systemic allergic reactions to environmental triggers, extreme temperatures, and food
Rash, flushing, hives, extreme itching, excema
Swallowing problems, no appetite, weight loss, muscle wasting
Next Steps/Treatment For Fred:
Within allopathic streams, they have a team of doctors; a GP, an allergist/immunologist, an endocrinologist, a respirologist and they have just been referred to a rheumatologist. Fred is prescribed multiple kinds of antihistamines, daily antacids, multiple puffers, topical treatments, hormone therapy, steroids, and immunosuppressants, all while routinely experiencing contraindications and reactions to these treatments. They have an upcoming appointment for a contrast MRI to have more conclusive results based on the findings from their previous scan. Following this, they will see a rheumatologist and will be appointed a neurologist. Fred is also working with a Lyme Literate Naturopathic Doctor (LLND) employing rigorous herbal and supplemental nutrional protocols in addition to acupuncture, massage therapy, somatic therapy, and cranial-sacral therapy. All of these strategies serve primarily to mitigate symptomatic flare-ups, and few serve to address, treat and resolve the illnesses. Fred has now been referred to yet another allergist/respirologist that specializes in workplace asthma and allergies with more tests scheduled for the winter.
Their path to healing is necessarily multi-tiered, interconnected and a trial-and-error process. Fred’s best chances to heal are through accessing costly private practice Lyme Literate Medical Doctors (LLMDs) for treatments and testing, either in British Columbia or Internationally. Even with this access, Fred needs time to pursue and respond to each diagnostic avenue and allow their system to digest each treatment plan before they are likely to see improvement. In other words, they will likely get sicker before they get better.
Fred also needs significant time to rest their weary and destabilized immune and nervous systems. Chronic illnesses such as Long Lyme and co-infections, prolonged mold exposure, and MCAS significantly impact the brain and nervous system. Rest and avoiding triggers is critical for their healing. Ultimately, Fred is likely to experience symptoms of Long Lyme indefinitely, however the goal of remission would radically change their quality of life.
This is a real opportunity to show up for someone you love, someone you may or may not know, someone who needs our tender, fierce, and real material care. This is the time to help Fred keep going in a world that does not adequately provide meaningful financial and therapeutic support for disabled/chronically ill people. This is the time to offer them some hope.
Fred truly appreciates you taking the time to read this, learn about Lyme, donate (every dollar is meaningful), and share with your networks. Please don’t send Fred direct messages about the Go-Fund Me or their conditions. Instead, lovin’ messages can be sent through the go fund me.
For every $5000 donated
Fred will post a karaoke performance here and on social media!
You know you wanna see that goodness!
What is Lyme disease?
Lyme disease is a bacterial infection caused by a spiral-shaped bacterium (spirochete) called Borrelia burgdorferi. There are roughly two dozen species in the Borrelia burgdorferi sensu lato complex, not all are human pathogens. The worldwide distribution of the various species is not uniform. In the United States, almost all reported cases of Lyme disease appear to be the result of Borrelia burgdorferi sensu stricto (Bbss) infections. In Europe, 3 species - B. garinii, B. afzelii, and Bbss, are responsible for most cases of Lyme disease. The various species are further divided into strains and there are hundreds of strains worldwide.
In its early stages, Lyme disease commonly results in a rash, joint pain and headaches. Later-stage Lyme disease is characterized by arthritic pain, cognitive difficulties, fatigue and many other symptoms that can have an enormous effect on a patient’s life. The Centers for Disease Control estimates that more than 300,000 new cases of Lyme disease occur each year in the US.
Lyme disease has been called the “great imitator.” Borrelia burgdorferi can infect multiple organs and tissues, producing a wide range of symptoms. Lyme can mimic rheumatologic and neurologic conditions, as well as chronic fatigue syndrome, fibromyalgia, and many difficult-to-diagnose multi-system illnesses. Patients with longer lasting cases of Lyme disease may be misdiagnosed with somatoform disorders.
So then, What is chronic lyme?
“Post-Treatment Lyme Disease Syndrome (PTLDS) is a real disorder that causes severe symptoms in the absence of clinically detectable infection,” says John N. Aucott, M.D., associate professor of medicine at the Johns Hopkins University School of Medicine and director of the Johns Hopkins Lyme Disease Clinical Research Center.
Similar to long COVID, some people with Lyme disease develop post-treatment Lyme disease syndrome, or PTLDS, and end up with symptoms that persist for weeks, months, and years. A recent study found over 27 percent of people tested with Lyme disease developed long-term symptoms.
If Lyme disease is not diagnosed and treated early, the spirochetes can spread and may go into hiding in different parts of the body. Weeks, months or even years later, patients may develop problems with the brain and nervous system, muscles and joints, heart and circulation, digestion, reproductive system, and skin. Symptoms may disappear even without treatment and different symptoms may appear at different times.
Testing + Treatment In Canada
Lyme Disease testing in Canada is infrastructurally outdated and decades behind other Western nations such as the United States and Germany. Former Provincial Public Health Director, Kieran Moore, has written various articles about how our Lyme Disease testing is picking up only a fraction of those truly infected and suffering from acute and chronic Lyme Disease, as it has become an endemic disease in Ontario.
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Because of the complexity and the political environment around Lyme, it often takes years to be diagnosed and it is extremely challenging to find Canadian doctors willing to treat it. Currently, Complex Chronic Lyme in any form is not recognized by the Canadian government. The CDC has only recently acknowledged that Cronic Lyme disease exists, Canada has not followed suit.
What is Mast Cell Activation Syndrome (MCAS)?
Mast Cell Activation Syndrome (MCAS) causes a person to have repeated severe allergy symptoms affecting several body systems. In MCAS, mast cells mistakenly release too many chemical agents, resulting in symptoms in the skin, gastrointestinal tract, heart, respiratory, and neurologic systems. Mast cells are present throughout most of our bodies and secrete different chemicals during allergic reactions. Symptoms include episodes of abdominal pain, cramping, diarrhea, flushing, itching, wheezing, coughing, lightheadedness, and rapid pulse, and low blood pressure. Symptoms can start at any age but usually begin in adulthood. The cause(s) of MCAS is unknown.
Diagnosis is based on the symptoms, clinical exam, and specific laboratory testing. Other conditions may need to be excluded before MCAS can be diagnosed.
Diagnosing these disorders is often a long, complicated process involving many areas of specialty medicine. Many patients suffer declining health for up to 10 years or longer before finally being diagnosed.
None of the current diagnostic tests are reliable for every patient. Some of these tests often return false negatives. Some tests return positive results outside the normal range, yet the patient experiences few symptoms and enjoys a normal unrestricted life. Many patients have completely normal test results (eg. tryptase, urine, bone marrow) yet they are disabled by these disorders.
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Resources: Google this business and you'll go into quite a rabbit hole
The challenges and controversies around Lyme disease: https://www.ilads.org/research-literature/controversies-challenges/
https://www.cbc.ca/radio/whitecoat/why-patients-are-caught-in-the-battle-over-treating-chronic-lyme-disease-1.528897
Learn more about Lyme disease and symptoms: https://www.lymedisease.org/lyme-basics/lyme-disease/symptoms/
Lyme patients tell their stories:
“Lyme Disease is Baffling, Even to Experts”:
There is not very much (to our knowledge) written about the experiences of trans patients with Lyme, but this story highlights some feminist issues can offer an opening into the struggles:
Leslie Fienberg, trans advocate and gender theorist, had Lyme and co-infections for many decades and later died from complications. Here is hir story:
Or watch these docs:
MCAS
https://www.huffpost.com/entry/meet-mcas-an-allergic-immune-system-disorder-linked_b_58f88d0ae4b01d4eb1e169a0
Organizer
Leonard Pernstein
Organizer
East York, ON
