Help Boz and Amy Beat Lyme Disease!
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Imagine living each day with chronic pain, fatigue, severe brain dysfunction, flu like symptoms, headaches, blurry vision, extreme muscle weakness & joint pain. This is what Boz and Amy experience everyday, among many other debilitating symptoms.
Lyme disease is known as 'the great imitator’, commonly misdiagnosed as MS, Fibromyalgia, Rheumatoid Arthritis, Lupus, Chronic Fatigue Syndrome (ME), Alzheimer's Disease & Parkinson's. It typically affects every organ in the body, including the heart, muscles & joints, gastro-intestinal system & neurological system. The spirochetes (bacteria) are known to embed themselves deep in the body's organs & tissues, in a cyst-like form, to survive indefinitely should a threat arise. Scientists have found the spirochetes in the cerebrospinal fluid & the grey matter of the brain. This is why eradication needs to be so rigorous, but also why relapse is common.
Richard/Boz (30) was diagnosed with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) at age 17 following irreconcilable symptoms after a bout of Glandular fever. In 2016, he was diagnosed with Chronic Neurological Lyme disease.
Amy (27) was diagnosed with CFS/ME age 20 following years of deteriorating symptoms. After 8 years of searching for answers to her ill health Amy was diagnosed with Chronic Lyme disease in 2013.
*the story of how Boz & Amy became friends is on Amy's blog here
The treatment options available in Australia have been unable to help Boz & Amy.
Because of the lack of awareness, funding & treatments available in Australia for Lyme Disease they have to travel overseas to seek effective treatment. A clinic in Cyprus is treating Lyme Disease patients using advanced science based medicine combining the powerful effects of Hyperbaric Oxygen Therapy (HBOT) & Intravenous Ozone Therapy.
YOU CAN HELP
Boz & Amy have each been suffering for over a decade now & desperately need to go to Cyprus for treatment but unfortunately they do not have the funds to make this happen themselves. They have both been housebound or bed ridden & unable to work for many years now as a result of the severity of their illnesses. They suffer from debilitating fatigue, pain, neurological, cognitive, musculoskeletal & digestive symptoms on a daily basis.
They would be forever grateful if you could help them make this happen & get their lives back on track.
Please, please share on social media!
Please donate. No donation is too small. Every little bit counts.
Thank you so much in advance for your donations, love & support!
OUR STORY (words by Boz)
Articulating one's plight with a broken brain & flailing body is not the simplest of tasks. Once upon a time, the words would have flowed effortlessly, smoothly onto the paper, a stream of consciousness that beckoned me to try my hand at journalism years later. This is back when my HSC (High School Certificate) was triumphed on learning small books of carefully construed notes verbatim the night before each exam, in a bid to get as much yield as possible on my freshly acquired European Union fake ID for the first half of the year - thank you internet. Fast forward to age 27 & I can't remember what year it is, what my address or car rego is, or where I parked my car, despite vested efforts to do all of the above. Today (I'm 30 now), I could read a quote in a book fifty times & still not be able to recite it to you tomorrow. And if you look up CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) or Lyme disease, you'll find one of the symptoms listed is "brain fog". Another symptom you'll find is "fatigue". All rather innocuous sounding terms really. But perhaps a little disserving to the reality of two utterly life-usurping diseases.
For myself, fatigue equated daily paralysis. Waking up after 14-hour sleeps to lie in bed completely inert, with an ardent desire to move, to get up & urinate, but with a disturbing inability to do so. It would take me an hour to muster up the energy to make it out of bed to the toilet ten feet away, from where I'd turn & stumble straight to the couch, only to collapse in a heap for another hour while I tried to muster up the energy to prepare breakfast. I was at ground zero: I had nothing. And I was hopeless at communicating this to those around me, even my sister with whom I lived at the time. Truth be told, I didn't have the energy to speak - I wanted to whisper -, & the words that did emerge were slurred & messy from the onslaught of neurological symptoms I experienced. Phone calls went unanswered, invitations accepted then declined, & within small windows I acted. I acted normal. I showed my face with radiant smiles & enlivened chat, even venturing so far as to surf & party when the Type A got the better of me.
I used to liken it to the aftermath of running a marathon in blistering heat, with zero nutrition or hydration, except for a bottle of scotch at the finish line - the morning after that, that was how I felt, all day, every day; & not just for a few weeks or months, but for years on end. But even that is putting it lightly. My blood felt thick & putrid, wretched even, my joints ached, I had severe restless legs syndrome throughout my entire body that made me want to rip my skin off, massive gastrointestinal issues, a chronically active fight-or-flight response that would render a pin-drop to a gunshot, heart palpitations, swollen glands, low blood pressure, a pervasive viral feeling that permeated every cell in my body, blurred vision, eye floaters, hearing loss, impaired coordination to the point that my legs felt like they were constantly going to give way, severe cramping, intolerance to light & sound, chronic insomnia despite crippling exhaustion, constant ticks & spasms all throughout my body, & I could barely string a sentence together, let alone make it to the street corner 25m down the road from my apartment. My brain was so far gone that I felt like the tether to this planet had been cut & I was out in orbit, teetering towards a lack of consciousness altogether. I'd sit & stare at a page in a book for half an hour trying to read a single sentence until the exertion of that simple act would push me horizontal. I felt deathly sick. In fact I couldn't actually fathom feeling sicker - I felt like I'd reached the pinnacle. When I first applied for the Disability Support Pension I was rejected, not because my pathology was at odds with my illness (it wasn't), but because I was too sick to physically attend the screening interviews. And when I saw a CFS/ME specialist for the first time for the results of some extensive testing he'd run on me, he glanced up from the pages & remarked, "I'm surprised you actually walked in here". Unlike many affected by CFS/ME, for whom testing can show very little, my results showed an impressive array of abnormalities, which perhaps was foreshadowing of a Lyme diagnosis years later. Unfortunately, what I have described isn't unique. It is essentially the gold standard, a platform with minor deviations that could just as much sum up my friend Amy's experience with these diseases as it could the next patient.
"I split my clinical time between [CFS/ME & AIDS], & I can tell you if I had to choose between the two illnesses I would rather have H.I.V" - Dr Nancy Klimas, AIDS & CFS Researcher
Having conditions like CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) & Lyme disease generally doesn't elicit much of a response when disclosed to those around you. Not only do they house seemingly unshakeable stigmas, like that CFS/ME is psychosomatic (debunked by science years ago), but also issues such as the hoo-hah from insurance companies denying that Lyme is contractable in Australia detracts from the very real fact that the disease still exists here & radically turns people's lives upside down, often for decades at a time. CFS/ME & Lyme are not simple diseases. They are multi-systemic, crippling diseases with very poor prognoses for those afflicted. The complexity of these conditions is next to none, & reversing the biological haywire inflicted by them typically takes years of superhuman discipline, with many never recovering. They are viewed as chronic conditions (for Lyme, if symptoms persist beyond the 30-day mark after acute infection), conditions one never fully bounces back from but rather adapts to long-term, with emphasis on improving quality of life - a perspective Amy & myself have been striving to defy since day one. If you look up CFS/ME or Lyme disease, you'll find an exhaustive list of symptoms, but unlike the case with many diseases whereby only a handful may be applicable, with these diseases usually the opposite stands true: they are all applicable. There is no go-to, no magic pill or designated allopathic treatment plan. What there is, is a widespread medical blindness to these diseases outside of a small group of often exorbitant specialists, & those who are aware are often aware of the fact that they can't do anything to help other than offer you routine testing. Enter the rabbit hole. Patients like myself & Amy invariably end up on the conveyer belt, going from doctor to doctor & specialist to specialist before typically landing in the world of functional medicine, wherein there lies some hope. As these debilitating diseases steadily sink their teeth, the fallback from this lack of recognition in the collective consciousness becomes increasingly apparent, often translating as further isolation, even from one's most intimate family members & friends, as the understanding just isn't there. But perhaps the cruelest irony of these diseases is their invisibility.
"Although they are ill with a debilitating flu-like illness every day of their lives, neighbours & even friends & family insist they look "just fine." It's an unfortunate fact that our culture has yet to accept the harsh reality of chronic disease; often, its ravages are invisible to the naked eye" - Dr David Bell, CFS Clinician & Researcher
"The irony to me about the situation that we all chronically live in is the harder you try to protect the people around you from being uncomfortable with the fact that you are sick, the more invisible it becomes" - Amberlin Wu, Patient Advocate
Amy & I fell sick as teenagers. When you are struck down by a mysterious set of symptoms with a hazy onset at such a young age, you don't know how to effectively communicate that or articulate that to those around you. The diseased state creeps up on you, & slowly the abnormal becomes the norm & you adapt to a new state of being, often until you reach tipping point, which can be years later. This can make talking about something that has dictated your entire adult life & some of your teenage years carry an air of disbelief, or even seem like some bizarre announcement, by virtue of one's silence & its sheer longevity.
A common misconception is that the appearance at the cafe or the beach denotes spontaneous remission from symptoms, or dramatic improvement. However, the common thread with CFS/ME & Lyme is that symptoms are constant & usually disproportionate to the body people see, to the smiles worn & the snippets of conversation. Often these interactions are surrounded by profound & unnerving collapse; the slightest exertion carrying the extremest payback. Yet at the same time we welcome escapism - a moment of sanity, of perceived normalcy, among the constant insanity of debilitating, unwavering symptoms. There's a tendency to want to present the best version of yourself, to hold onto that one iota of pride, & it is the most human of traits to want to forget, however momentarily, the stark, soul-consuming reality of years spent in bed or on the couch with symptoms so intense that merely conversing with another human being at an audible level is akin to moving through quicksand. The flip side of the coin is this can convolute the image friends & family have of us. And understandably. Pride gets in the way. And when the simple ability to articulate is so impaired by a broken brain & frazzled neurology, it makes the task of knowing how to articulate this constant pain & suffering, this elephant in the room at every minute, every second of your life, monolithic. Friends & family instead see unanswered calls, declined invitations or last minute cancellations - or the highlight reel of social media & cameo appearances. It's hard to be vulnerable when you can't speak or move. I used to force myself to read, to walk even, to do things absurdly above & beyond my physical & mental capacities, because you can't change your nature. That burning desire to explore & experience life remains. Buried beneath circumstance: the desire, passion & ambition in clash with the imposition. The disease is not a representation or manifestation of a troubled soul - it is its own beast. Amy & I are the perennial optimists. We are almost evangelical about our futures. Our mere perseverance is proof of that. The reality though is that it would be sane to tap out, & sadly the leading cause of death for those with Lyme disease is suicide. Trudging on with such severe, earth shattering symptoms is insanity. But there is also always hope, always that prospect of the paradise you envisioned for your life becoming your reality. It is the pursuit of utmost potential; of going full circle; of finding you again.
When someone is sick for years upon years with a disease the average person knows nothing about, there's a tendency to think that there must be some fatal flaw, some emotional defect or that there is some hypochondria at play. There also comes a point when it becomes almost taboo to talk about it, almost an insinuation that you have created this elaborate narrative around your life that you strongly identify with & all you have to do is get your shit together & knuckle down. This couldn't be further from the truth. Amy & I crave simplicity; we crave employment; we crave normalcy. And we tried. For years we tried to keep up under the delusion youth would bestow the panacea, that this would pass, that we could mind over matter whatever ailed us. But this merely further depleted a bank account already in overdraught.
"...there are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. It’s not an illness that people can just imagine that they have, & it’s not a psychological illness. In my view, that debate, which has raged for 20 years, should now be over" - Dr. Anthony Komaroff, CFS clinician and researcher, Harvard Medical School
Amy & I have dug through some serious rubble to get to where we are. Touch wood the days of tossing & turning & complete incapacity are behind us, but the common thread remains: we feel sick - every minute of every day. We have learnt to exist within a weak infrastructure of supplements, detoxification protocols & religious dietary control, essentially a micro environment. The sad reality though is that the slightest sidestep, the slightest variable, topples that foundation: us. We want more. We want stability & the ability to see out our dreams & desires, to travel the world ten times over if our hearts call for it, but right now we can't. We are also not victims. It'd be easy to say that our youth was stolen from us. Both Amy & I view the journeys we have been on as blessings. We are full of gratitude for the lessons we have learnt along the way, for the people we have become as a result. We have evolved in ways we would have never thought possible, learnt anew when we thought there was nothing left to learn. The soul has many shades; shades most apparent in the shadows of despair. While admittedly I embarked on my full descent into CFS/ME at 17, the sleepy onset of symptoms truly began around 14, & at 15 for Amy, which in light of recent revelations surrounding our illnesses, coincides with exposure to a smattering of various environmental triggers (toxic mould, heavy metals & excessive antibiotic use) that, unbeknownst to us at the time, would then dictate what should arguably have been the best years of our lives. It carries an air of disbelief to even say that, to gaze upon a precipice of that scale: entire adulthoods spent sick, but it is the sad truth. And yet we surfed, drank, travelled & ran, with gelatine bodies & disciplined souls, until we couldn't anymore. Friendships withered & isolation ensued. We became spectators to life. We often wonder what different responses different labels would have brought to our plight, that perhaps applause would have replaced the silence were it not for the politics of drastically underrepresented, underfunded & misunderstood diseases.
"I had some AIDS patients who had Lyme disease & you know what? The Lyme was WAY worse on the patient" - Dr Joseph Jemsek (HIV treatment pioneer)
When I told several people that Amy & I were going to crowdfund treatment in Cyprus, one response was that it could potentially appear as though we were trying to fund a holiday - at the core of that the sentiment that perhaps it'd be best to do individual campaigns. When Amy & I first connected, our exchanges together were met by constant disbelief at how startlingly similar our journeys had been, from the ages we fell sick to the multitude of symptoms & modalities we have both explored in pursuit of recovery. Amy is the first person I have encountered to have tried as much as myself, if not more, & I often joke that she is the female version of me. We are kindred spirits on a universal journey, two genuinely good people who have decided to converge our knowledge & resources in a grand attempt to get back what we lost long ago. The fact that we have relentlessly pursued so many avenues not only shows our unflinching drive to get a second go, but the knowledge we have accrued along the way means that - we both constantly get told we should enter the world of functional medicine - but also that we both know what works & what doesn't. The treatment in Cyprus is rigorous, & consists of daily Hyperbaric Oxygen Therapy (HBOT) & the Russian method of intravenous ozone (elaborated on below), among other adjunct therapies. As much as we'd both love to embark on the holiday of our dreams (hey, we both feel like we deserve one), we are going for one purpose only: to get our lives back. We have both made significant gains over the last few years, but we are still a long way off where we need to be & we need your help to conquer this beast once & for all.
To say our journeys have been challenging is an understatement. We have sacrificed everything. And not just the metaphysical. When we both learnt of the major role that toxic mould plays in our illnesses, we had to adios all of our possessions, literally. We were stripped bare when we didn't think we could get any more exposed, any more raw. There is no certainty in disease & that is a tall precipice from which to view the world. But we are also troopers. We have worked voraciously & tirelessly for years to rekindle that flame, to live the lives we deserve to live & to make our wildest dreams our reality. Unfortunately chronic illness will not only rob you of your health, but it will also exponentially exhaust your resources until you end up somewhere like here. Asking for help so publicly, so outright, is not an easy thing to do, & nor something I or Amy ever wished for. It can feel incredibly exposing to be so vulnerable & to lay everything out for the world to see, especially when they might see images of health, & not the guy or girl who have suffered so tirelessly - & if you don't mind my saying so myself: graciously - behind closed doors for most of their lives. It's easier to be that first guy or girl but that is simply not the truth. We are sick. Really sick. And we have been for too damn long. We need our lives back; we want our lives back & we are worthy of that. For those that know Amy personally, you'll know that she is one of the kindest, sweetest & most selfless human beings on this planet (I'm alright too). But she is not living to her full potential, & nor am I. The treatment in Cyprus offers a strong chance of reversing that, at offering Amy & I a second lease of life. It'd be wrong to build massive expectation around the treatment so publicly, but it is a rigorous & intense treatment with proven efficacy against Lyme & mould that has been shown to dramatically turn many people in our position's lives around. Needless to say this call to arms would not occur were there not the utmost faith that this treatment could be absolutely life-altering for us. We also want to stay in Cyprus for two months post-treatment in order to have a window of time to consult with the clinic's doctors should any complications arise, but also to have access to supplementary treatments should they be deemed necessary. On top of the Lyme, our bodies have an accumulation of mould due to genetic susceptibilities & an inability to detoxify properly. Since getting rid of our possessions & following a protocol pioneered by a US doctor (Dr Shoemaker), we have become hypersensitive to moulds in our environment overnight & have highly adverse inflammatory reactions when exposed, not just to the inside of buildings, but to the outdoors air too. Cyprus is deemed the optimal environment for the dilemma we face, & it only seems natural that we try & stay there after to consolidate & optimise any gains we make during treatment.
To give is divine. It is one of the greatest gifts we can give another human being, & it often comes back ten fold. It doesn't have to be much, it doesn't have to be anything, whatever you can reasonably afford, or if you can't afford to donate anything either, then that is also fine. Just know that every donation, no matter how small, counts. And if you haven't hung out with me or Amy in a long time, or you barely know us, or you don't know us at all, don't be weirded out by making a donation - the world could use a little more love right now & we could too :) And to everyone: Thank you! At the very least, our story will open your eyes to the plight of millions around the world who mostly inhabit the shadows & whose voices are often never heard. And if you can't afford to make a donation, feel free to share this. No gesture is too small. Whatever can help give this campaign traction can help give Amy & my lives some traction. We have a lot to contribute to this world & we are ready to get started. Love to you all X
*& for the record, this took me an entire week to write with a dizzying array of proof-reads ☺️
THE TREATMENT PROGRAM IN CYPRUS
The International Guidelines for the treatment of Neurological Lyme Disease is 40 hours using 100% medical grade oxygen to a depth of 14 metres or a pressure of 2.4 ATA - atmospheres for 60 minutes of oxygen breathing time.
4 1/2 - 5 week package of core therapies:
• Hyperbaric Oxygen Therapy (HBOT) - minimum 27 sessions (40 hours) at 2.4 ATA.
• IV Ozone (Russian method) - 27 daily sessions. Ozonated Saline through drip
Among other adjunct therapies
COSTS
Treatment $15,350
Flights $3,000
Accommodation $6,000 ($250/wk each)
Food $4,500 ($25 per day each)
= $28,850
Health Journeys/Snapshots
Amy
• HHV6
• Mycoplasma
• Lyme Disease/Chronic Borrelia Burgdorferi Infection and Leptospirosis
• Pyrroluria, MTHRF gene mutation
• Multiple parasitic infections: Blastocystis Hominis, Ascaris, Entamoeba Hystolitica
• Adrenal fatigue - cortisol & female hormone imbalance
• Amines, salicylates & glutamate intolerances
• CIRS/Mould Illness
• Chronic systemic pain
• Severe head pressure & tingling sensations around mouth, face & hands
• Chronic headaches
• TMJ (Temporomandibular Joint)
• Leaky gut & IBS, IgG food intolerances
• Mercury, Lead and Arsenic toxicity
• Heavy, frequent menstruation every 21 days
• Anxiety
• Sensations of tiny pricks/stinging randomly over the body just under the skin
• Air hunger, chest tightness, breathlessness
• Nerve pain in teeth that worsens with eating
Boz/Richard
• Chronic EBV (Glandular Fever) - have had four times, with one instance lasting a year & another, 1.5 years, due to failure to produce antibodies to fight off recurrent infection. Diagnosed with CFS/ME at 17 after failure to relive symptoms a year & half after first infection
• Gilbert's Syndrome
• Hashimoto's Thyroiditis
• Hypothyroidism
• Chronic Streptococcus
• Chronic Mycoplasma pneumoniae
• Low blood pressure
• Hypoglycaemia
• Blastocystis Hominis
• Flukes
• Neurological Lyme disease (diagnosed a little over a year ago. First known tick bite 8 years ago. Two tick bites a couple of months ago - have caused spiralling of symptoms)
• Mercury poisoning (both chronic & acute) - toxic levels of arsenic & thallium also detected
• Kryptopyrroles/Pyrroluria
• Scarlett Fever
• CMV (Cytomegalovirus)
• Helicobactor/h.pylori
•POTS
•MTHFR gene: undermethylation (impaired ability of the body to detoxify properly)
• Modified Mumps
• Candida/gut dysbiosis
• Osteopenia (halfway to osteoporosis, reduced bone density)
• Adrenal fatigue
• CIRS (Chronic Inflammatory Response Syndrome): multi susceptible gene (1-2% of the population)
• Polyps excised on colon
• IBS & Leaky Gut Syndrome
• Constant ear blockages & need to equalise, hearing loss
• Speech difficulty
• Numbness in the extremities
• Multiple food sensitivities (IgG): Non Celiac Gluten Sensitivity
• Restless Legs Syndrome (RLS)
Resources
For more information on Lyme Disease:
http://www.lymedisease.org.au/
Currently the Australian Government fails to admit to the existence of Lyme Disease in Australia, basing their stance on a highly floored study published in 1994 that failed to find evidence of Borrelia in Australian ticks. Many other independent studies have found evidence of Lyme Disease in Australia including those listed on this page . Dr Mayne, a Lyme disease specialist from Sydney has published two studies providing evidence of Lyme Disease infections acquired in Australia here & here
Excellent podcast exploring the complexity of CFS/ME:
http://www.fxmedicine.com.au/podcast/podcast.xml
Extremely insightful Ted talk by CFS/ME sufferer & advocate, Jennifer Brea: http://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose#t-1016074
Podcast with Dr Shoemaker on CIRS/mould: https://itunes.apple.com/au/podcast/bulletproof-radio/id451295014?mt=2&i=327543657
A case for ozone therapy: https://itunes.apple.com/au/podcast/bulletproof-radio/id451295014?mt=2&i=327543657
An eye-opening documentary on the deleterious health impacts of toxic mould: https://youtu.be/YOX4duWKaz8
Lyme disease is known as 'the great imitator’, commonly misdiagnosed as MS, Fibromyalgia, Rheumatoid Arthritis, Lupus, Chronic Fatigue Syndrome (ME), Alzheimer's Disease & Parkinson's. It typically affects every organ in the body, including the heart, muscles & joints, gastro-intestinal system & neurological system. The spirochetes (bacteria) are known to embed themselves deep in the body's organs & tissues, in a cyst-like form, to survive indefinitely should a threat arise. Scientists have found the spirochetes in the cerebrospinal fluid & the grey matter of the brain. This is why eradication needs to be so rigorous, but also why relapse is common.
Richard/Boz (30) was diagnosed with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) at age 17 following irreconcilable symptoms after a bout of Glandular fever. In 2016, he was diagnosed with Chronic Neurological Lyme disease.
Amy (27) was diagnosed with CFS/ME age 20 following years of deteriorating symptoms. After 8 years of searching for answers to her ill health Amy was diagnosed with Chronic Lyme disease in 2013.
*the story of how Boz & Amy became friends is on Amy's blog here
The treatment options available in Australia have been unable to help Boz & Amy.
Because of the lack of awareness, funding & treatments available in Australia for Lyme Disease they have to travel overseas to seek effective treatment. A clinic in Cyprus is treating Lyme Disease patients using advanced science based medicine combining the powerful effects of Hyperbaric Oxygen Therapy (HBOT) & Intravenous Ozone Therapy.
YOU CAN HELP
Boz & Amy have each been suffering for over a decade now & desperately need to go to Cyprus for treatment but unfortunately they do not have the funds to make this happen themselves. They have both been housebound or bed ridden & unable to work for many years now as a result of the severity of their illnesses. They suffer from debilitating fatigue, pain, neurological, cognitive, musculoskeletal & digestive symptoms on a daily basis.
They would be forever grateful if you could help them make this happen & get their lives back on track.
Please, please share on social media!
Please donate. No donation is too small. Every little bit counts.
Thank you so much in advance for your donations, love & support!
OUR STORY (words by Boz)
Articulating one's plight with a broken brain & flailing body is not the simplest of tasks. Once upon a time, the words would have flowed effortlessly, smoothly onto the paper, a stream of consciousness that beckoned me to try my hand at journalism years later. This is back when my HSC (High School Certificate) was triumphed on learning small books of carefully construed notes verbatim the night before each exam, in a bid to get as much yield as possible on my freshly acquired European Union fake ID for the first half of the year - thank you internet. Fast forward to age 27 & I can't remember what year it is, what my address or car rego is, or where I parked my car, despite vested efforts to do all of the above. Today (I'm 30 now), I could read a quote in a book fifty times & still not be able to recite it to you tomorrow. And if you look up CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) or Lyme disease, you'll find one of the symptoms listed is "brain fog". Another symptom you'll find is "fatigue". All rather innocuous sounding terms really. But perhaps a little disserving to the reality of two utterly life-usurping diseases.
For myself, fatigue equated daily paralysis. Waking up after 14-hour sleeps to lie in bed completely inert, with an ardent desire to move, to get up & urinate, but with a disturbing inability to do so. It would take me an hour to muster up the energy to make it out of bed to the toilet ten feet away, from where I'd turn & stumble straight to the couch, only to collapse in a heap for another hour while I tried to muster up the energy to prepare breakfast. I was at ground zero: I had nothing. And I was hopeless at communicating this to those around me, even my sister with whom I lived at the time. Truth be told, I didn't have the energy to speak - I wanted to whisper -, & the words that did emerge were slurred & messy from the onslaught of neurological symptoms I experienced. Phone calls went unanswered, invitations accepted then declined, & within small windows I acted. I acted normal. I showed my face with radiant smiles & enlivened chat, even venturing so far as to surf & party when the Type A got the better of me.
I used to liken it to the aftermath of running a marathon in blistering heat, with zero nutrition or hydration, except for a bottle of scotch at the finish line - the morning after that, that was how I felt, all day, every day; & not just for a few weeks or months, but for years on end. But even that is putting it lightly. My blood felt thick & putrid, wretched even, my joints ached, I had severe restless legs syndrome throughout my entire body that made me want to rip my skin off, massive gastrointestinal issues, a chronically active fight-or-flight response that would render a pin-drop to a gunshot, heart palpitations, swollen glands, low blood pressure, a pervasive viral feeling that permeated every cell in my body, blurred vision, eye floaters, hearing loss, impaired coordination to the point that my legs felt like they were constantly going to give way, severe cramping, intolerance to light & sound, chronic insomnia despite crippling exhaustion, constant ticks & spasms all throughout my body, & I could barely string a sentence together, let alone make it to the street corner 25m down the road from my apartment. My brain was so far gone that I felt like the tether to this planet had been cut & I was out in orbit, teetering towards a lack of consciousness altogether. I'd sit & stare at a page in a book for half an hour trying to read a single sentence until the exertion of that simple act would push me horizontal. I felt deathly sick. In fact I couldn't actually fathom feeling sicker - I felt like I'd reached the pinnacle. When I first applied for the Disability Support Pension I was rejected, not because my pathology was at odds with my illness (it wasn't), but because I was too sick to physically attend the screening interviews. And when I saw a CFS/ME specialist for the first time for the results of some extensive testing he'd run on me, he glanced up from the pages & remarked, "I'm surprised you actually walked in here". Unlike many affected by CFS/ME, for whom testing can show very little, my results showed an impressive array of abnormalities, which perhaps was foreshadowing of a Lyme diagnosis years later. Unfortunately, what I have described isn't unique. It is essentially the gold standard, a platform with minor deviations that could just as much sum up my friend Amy's experience with these diseases as it could the next patient.
"I split my clinical time between [CFS/ME & AIDS], & I can tell you if I had to choose between the two illnesses I would rather have H.I.V" - Dr Nancy Klimas, AIDS & CFS Researcher
Having conditions like CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) & Lyme disease generally doesn't elicit much of a response when disclosed to those around you. Not only do they house seemingly unshakeable stigmas, like that CFS/ME is psychosomatic (debunked by science years ago), but also issues such as the hoo-hah from insurance companies denying that Lyme is contractable in Australia detracts from the very real fact that the disease still exists here & radically turns people's lives upside down, often for decades at a time. CFS/ME & Lyme are not simple diseases. They are multi-systemic, crippling diseases with very poor prognoses for those afflicted. The complexity of these conditions is next to none, & reversing the biological haywire inflicted by them typically takes years of superhuman discipline, with many never recovering. They are viewed as chronic conditions (for Lyme, if symptoms persist beyond the 30-day mark after acute infection), conditions one never fully bounces back from but rather adapts to long-term, with emphasis on improving quality of life - a perspective Amy & myself have been striving to defy since day one. If you look up CFS/ME or Lyme disease, you'll find an exhaustive list of symptoms, but unlike the case with many diseases whereby only a handful may be applicable, with these diseases usually the opposite stands true: they are all applicable. There is no go-to, no magic pill or designated allopathic treatment plan. What there is, is a widespread medical blindness to these diseases outside of a small group of often exorbitant specialists, & those who are aware are often aware of the fact that they can't do anything to help other than offer you routine testing. Enter the rabbit hole. Patients like myself & Amy invariably end up on the conveyer belt, going from doctor to doctor & specialist to specialist before typically landing in the world of functional medicine, wherein there lies some hope. As these debilitating diseases steadily sink their teeth, the fallback from this lack of recognition in the collective consciousness becomes increasingly apparent, often translating as further isolation, even from one's most intimate family members & friends, as the understanding just isn't there. But perhaps the cruelest irony of these diseases is their invisibility.
"Although they are ill with a debilitating flu-like illness every day of their lives, neighbours & even friends & family insist they look "just fine." It's an unfortunate fact that our culture has yet to accept the harsh reality of chronic disease; often, its ravages are invisible to the naked eye" - Dr David Bell, CFS Clinician & Researcher
"The irony to me about the situation that we all chronically live in is the harder you try to protect the people around you from being uncomfortable with the fact that you are sick, the more invisible it becomes" - Amberlin Wu, Patient Advocate
Amy & I fell sick as teenagers. When you are struck down by a mysterious set of symptoms with a hazy onset at such a young age, you don't know how to effectively communicate that or articulate that to those around you. The diseased state creeps up on you, & slowly the abnormal becomes the norm & you adapt to a new state of being, often until you reach tipping point, which can be years later. This can make talking about something that has dictated your entire adult life & some of your teenage years carry an air of disbelief, or even seem like some bizarre announcement, by virtue of one's silence & its sheer longevity.
A common misconception is that the appearance at the cafe or the beach denotes spontaneous remission from symptoms, or dramatic improvement. However, the common thread with CFS/ME & Lyme is that symptoms are constant & usually disproportionate to the body people see, to the smiles worn & the snippets of conversation. Often these interactions are surrounded by profound & unnerving collapse; the slightest exertion carrying the extremest payback. Yet at the same time we welcome escapism - a moment of sanity, of perceived normalcy, among the constant insanity of debilitating, unwavering symptoms. There's a tendency to want to present the best version of yourself, to hold onto that one iota of pride, & it is the most human of traits to want to forget, however momentarily, the stark, soul-consuming reality of years spent in bed or on the couch with symptoms so intense that merely conversing with another human being at an audible level is akin to moving through quicksand. The flip side of the coin is this can convolute the image friends & family have of us. And understandably. Pride gets in the way. And when the simple ability to articulate is so impaired by a broken brain & frazzled neurology, it makes the task of knowing how to articulate this constant pain & suffering, this elephant in the room at every minute, every second of your life, monolithic. Friends & family instead see unanswered calls, declined invitations or last minute cancellations - or the highlight reel of social media & cameo appearances. It's hard to be vulnerable when you can't speak or move. I used to force myself to read, to walk even, to do things absurdly above & beyond my physical & mental capacities, because you can't change your nature. That burning desire to explore & experience life remains. Buried beneath circumstance: the desire, passion & ambition in clash with the imposition. The disease is not a representation or manifestation of a troubled soul - it is its own beast. Amy & I are the perennial optimists. We are almost evangelical about our futures. Our mere perseverance is proof of that. The reality though is that it would be sane to tap out, & sadly the leading cause of death for those with Lyme disease is suicide. Trudging on with such severe, earth shattering symptoms is insanity. But there is also always hope, always that prospect of the paradise you envisioned for your life becoming your reality. It is the pursuit of utmost potential; of going full circle; of finding you again.
When someone is sick for years upon years with a disease the average person knows nothing about, there's a tendency to think that there must be some fatal flaw, some emotional defect or that there is some hypochondria at play. There also comes a point when it becomes almost taboo to talk about it, almost an insinuation that you have created this elaborate narrative around your life that you strongly identify with & all you have to do is get your shit together & knuckle down. This couldn't be further from the truth. Amy & I crave simplicity; we crave employment; we crave normalcy. And we tried. For years we tried to keep up under the delusion youth would bestow the panacea, that this would pass, that we could mind over matter whatever ailed us. But this merely further depleted a bank account already in overdraught.
"...there are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. It’s not an illness that people can just imagine that they have, & it’s not a psychological illness. In my view, that debate, which has raged for 20 years, should now be over" - Dr. Anthony Komaroff, CFS clinician and researcher, Harvard Medical School
Amy & I have dug through some serious rubble to get to where we are. Touch wood the days of tossing & turning & complete incapacity are behind us, but the common thread remains: we feel sick - every minute of every day. We have learnt to exist within a weak infrastructure of supplements, detoxification protocols & religious dietary control, essentially a micro environment. The sad reality though is that the slightest sidestep, the slightest variable, topples that foundation: us. We want more. We want stability & the ability to see out our dreams & desires, to travel the world ten times over if our hearts call for it, but right now we can't. We are also not victims. It'd be easy to say that our youth was stolen from us. Both Amy & I view the journeys we have been on as blessings. We are full of gratitude for the lessons we have learnt along the way, for the people we have become as a result. We have evolved in ways we would have never thought possible, learnt anew when we thought there was nothing left to learn. The soul has many shades; shades most apparent in the shadows of despair. While admittedly I embarked on my full descent into CFS/ME at 17, the sleepy onset of symptoms truly began around 14, & at 15 for Amy, which in light of recent revelations surrounding our illnesses, coincides with exposure to a smattering of various environmental triggers (toxic mould, heavy metals & excessive antibiotic use) that, unbeknownst to us at the time, would then dictate what should arguably have been the best years of our lives. It carries an air of disbelief to even say that, to gaze upon a precipice of that scale: entire adulthoods spent sick, but it is the sad truth. And yet we surfed, drank, travelled & ran, with gelatine bodies & disciplined souls, until we couldn't anymore. Friendships withered & isolation ensued. We became spectators to life. We often wonder what different responses different labels would have brought to our plight, that perhaps applause would have replaced the silence were it not for the politics of drastically underrepresented, underfunded & misunderstood diseases.
"I had some AIDS patients who had Lyme disease & you know what? The Lyme was WAY worse on the patient" - Dr Joseph Jemsek (HIV treatment pioneer)
When I told several people that Amy & I were going to crowdfund treatment in Cyprus, one response was that it could potentially appear as though we were trying to fund a holiday - at the core of that the sentiment that perhaps it'd be best to do individual campaigns. When Amy & I first connected, our exchanges together were met by constant disbelief at how startlingly similar our journeys had been, from the ages we fell sick to the multitude of symptoms & modalities we have both explored in pursuit of recovery. Amy is the first person I have encountered to have tried as much as myself, if not more, & I often joke that she is the female version of me. We are kindred spirits on a universal journey, two genuinely good people who have decided to converge our knowledge & resources in a grand attempt to get back what we lost long ago. The fact that we have relentlessly pursued so many avenues not only shows our unflinching drive to get a second go, but the knowledge we have accrued along the way means that - we both constantly get told we should enter the world of functional medicine - but also that we both know what works & what doesn't. The treatment in Cyprus is rigorous, & consists of daily Hyperbaric Oxygen Therapy (HBOT) & the Russian method of intravenous ozone (elaborated on below), among other adjunct therapies. As much as we'd both love to embark on the holiday of our dreams (hey, we both feel like we deserve one), we are going for one purpose only: to get our lives back. We have both made significant gains over the last few years, but we are still a long way off where we need to be & we need your help to conquer this beast once & for all.
To say our journeys have been challenging is an understatement. We have sacrificed everything. And not just the metaphysical. When we both learnt of the major role that toxic mould plays in our illnesses, we had to adios all of our possessions, literally. We were stripped bare when we didn't think we could get any more exposed, any more raw. There is no certainty in disease & that is a tall precipice from which to view the world. But we are also troopers. We have worked voraciously & tirelessly for years to rekindle that flame, to live the lives we deserve to live & to make our wildest dreams our reality. Unfortunately chronic illness will not only rob you of your health, but it will also exponentially exhaust your resources until you end up somewhere like here. Asking for help so publicly, so outright, is not an easy thing to do, & nor something I or Amy ever wished for. It can feel incredibly exposing to be so vulnerable & to lay everything out for the world to see, especially when they might see images of health, & not the guy or girl who have suffered so tirelessly - & if you don't mind my saying so myself: graciously - behind closed doors for most of their lives. It's easier to be that first guy or girl but that is simply not the truth. We are sick. Really sick. And we have been for too damn long. We need our lives back; we want our lives back & we are worthy of that. For those that know Amy personally, you'll know that she is one of the kindest, sweetest & most selfless human beings on this planet (I'm alright too). But she is not living to her full potential, & nor am I. The treatment in Cyprus offers a strong chance of reversing that, at offering Amy & I a second lease of life. It'd be wrong to build massive expectation around the treatment so publicly, but it is a rigorous & intense treatment with proven efficacy against Lyme & mould that has been shown to dramatically turn many people in our position's lives around. Needless to say this call to arms would not occur were there not the utmost faith that this treatment could be absolutely life-altering for us. We also want to stay in Cyprus for two months post-treatment in order to have a window of time to consult with the clinic's doctors should any complications arise, but also to have access to supplementary treatments should they be deemed necessary. On top of the Lyme, our bodies have an accumulation of mould due to genetic susceptibilities & an inability to detoxify properly. Since getting rid of our possessions & following a protocol pioneered by a US doctor (Dr Shoemaker), we have become hypersensitive to moulds in our environment overnight & have highly adverse inflammatory reactions when exposed, not just to the inside of buildings, but to the outdoors air too. Cyprus is deemed the optimal environment for the dilemma we face, & it only seems natural that we try & stay there after to consolidate & optimise any gains we make during treatment.
To give is divine. It is one of the greatest gifts we can give another human being, & it often comes back ten fold. It doesn't have to be much, it doesn't have to be anything, whatever you can reasonably afford, or if you can't afford to donate anything either, then that is also fine. Just know that every donation, no matter how small, counts. And if you haven't hung out with me or Amy in a long time, or you barely know us, or you don't know us at all, don't be weirded out by making a donation - the world could use a little more love right now & we could too :) And to everyone: Thank you! At the very least, our story will open your eyes to the plight of millions around the world who mostly inhabit the shadows & whose voices are often never heard. And if you can't afford to make a donation, feel free to share this. No gesture is too small. Whatever can help give this campaign traction can help give Amy & my lives some traction. We have a lot to contribute to this world & we are ready to get started. Love to you all X
*& for the record, this took me an entire week to write with a dizzying array of proof-reads ☺️
THE TREATMENT PROGRAM IN CYPRUS
The International Guidelines for the treatment of Neurological Lyme Disease is 40 hours using 100% medical grade oxygen to a depth of 14 metres or a pressure of 2.4 ATA - atmospheres for 60 minutes of oxygen breathing time.
4 1/2 - 5 week package of core therapies:
• Hyperbaric Oxygen Therapy (HBOT) - minimum 27 sessions (40 hours) at 2.4 ATA.
• IV Ozone (Russian method) - 27 daily sessions. Ozonated Saline through drip
Among other adjunct therapies
COSTS
Treatment $15,350
Flights $3,000
Accommodation $6,000 ($250/wk each)
Food $4,500 ($25 per day each)
= $28,850
Health Journeys/Snapshots
Amy
• HHV6
• Mycoplasma
• Lyme Disease/Chronic Borrelia Burgdorferi Infection and Leptospirosis
• Pyrroluria, MTHRF gene mutation
• Multiple parasitic infections: Blastocystis Hominis, Ascaris, Entamoeba Hystolitica
• Adrenal fatigue - cortisol & female hormone imbalance
• Amines, salicylates & glutamate intolerances
• CIRS/Mould Illness
• Chronic systemic pain
• Severe head pressure & tingling sensations around mouth, face & hands
• Chronic headaches
• TMJ (Temporomandibular Joint)
• Leaky gut & IBS, IgG food intolerances
• Mercury, Lead and Arsenic toxicity
• Heavy, frequent menstruation every 21 days
• Anxiety
• Sensations of tiny pricks/stinging randomly over the body just under the skin
• Air hunger, chest tightness, breathlessness
• Nerve pain in teeth that worsens with eating
Boz/Richard
• Chronic EBV (Glandular Fever) - have had four times, with one instance lasting a year & another, 1.5 years, due to failure to produce antibodies to fight off recurrent infection. Diagnosed with CFS/ME at 17 after failure to relive symptoms a year & half after first infection
• Gilbert's Syndrome
• Hashimoto's Thyroiditis
• Hypothyroidism
• Chronic Streptococcus
• Chronic Mycoplasma pneumoniae
• Low blood pressure
• Hypoglycaemia
• Blastocystis Hominis
• Flukes
• Neurological Lyme disease (diagnosed a little over a year ago. First known tick bite 8 years ago. Two tick bites a couple of months ago - have caused spiralling of symptoms)
• Mercury poisoning (both chronic & acute) - toxic levels of arsenic & thallium also detected
• Kryptopyrroles/Pyrroluria
• Scarlett Fever
• CMV (Cytomegalovirus)
• Helicobactor/h.pylori
•POTS
•MTHFR gene: undermethylation (impaired ability of the body to detoxify properly)
• Modified Mumps
• Candida/gut dysbiosis
• Osteopenia (halfway to osteoporosis, reduced bone density)
• Adrenal fatigue
• CIRS (Chronic Inflammatory Response Syndrome): multi susceptible gene (1-2% of the population)
• Polyps excised on colon
• IBS & Leaky Gut Syndrome
• Constant ear blockages & need to equalise, hearing loss
• Speech difficulty
• Numbness in the extremities
• Multiple food sensitivities (IgG): Non Celiac Gluten Sensitivity
• Restless Legs Syndrome (RLS)
Resources
For more information on Lyme Disease:
http://www.lymedisease.org.au/
Currently the Australian Government fails to admit to the existence of Lyme Disease in Australia, basing their stance on a highly floored study published in 1994 that failed to find evidence of Borrelia in Australian ticks. Many other independent studies have found evidence of Lyme Disease in Australia including those listed on this page . Dr Mayne, a Lyme disease specialist from Sydney has published two studies providing evidence of Lyme Disease infections acquired in Australia here & here
Excellent podcast exploring the complexity of CFS/ME:
http://www.fxmedicine.com.au/podcast/podcast.xml
Extremely insightful Ted talk by CFS/ME sufferer & advocate, Jennifer Brea: http://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose#t-1016074
Podcast with Dr Shoemaker on CIRS/mould: https://itunes.apple.com/au/podcast/bulletproof-radio/id451295014?mt=2&i=327543657
A case for ozone therapy: https://itunes.apple.com/au/podcast/bulletproof-radio/id451295014?mt=2&i=327543657
An eye-opening documentary on the deleterious health impacts of toxic mould: https://youtu.be/YOX4duWKaz8
Organizer
Richard Barry
Organizer
Melbourne VIC
