Cure Rachel’s Chronic Lyme Borreliosis
Those of you who know me would know that I am a very kind, loving person who would help anyone should they ask. I’m not usually the one asking for help. Even during my sickest moments, I don’t like to bother anyone to ask for their assistance. Well now I have no choice, I need your help.
Some of you know that I have been battling with health problems for many years. I noticed a distinct decline about 6-7 months ago. I have seen so many specialists including Neurologists, Rheumatologists, Gynaecologists, Endocrinologists, Dermatologists, Gastroenterologists, Immunologists and the list goes on. I have been diagnosed with many conditions and suffer every day from debilitating symptoms. Despite what people may think, I’m very strong and have a high tolerance for the daily pain I’m in, not many people would know the true extent of how much I suffer. I fake looking like there is nothing wrong very well.
I’ve been extremely pro-active seeking knowledge in the form of Journal articles, naturopathy, yoga, traditional Indian medicine and other alternate therapies in addition to the cornucopia of hospitilations, MRIs, blood tests and medication I’ve been forced to take. The quality of my veins has been seriously affected due to the amount of blood tests I have been required to undergo. During stays in hospital I often have to be cannulated many times due to collapsed veins. Below is a pic of me with just some of the medication I use daily.So finally in January 2019, after my doctor suggesting I have bloods taken and sent to an American lab for testing, which costed $2000, I have an answer. Chronic bacterial infection, LYME BORRELIOSIS. It is also likely I have some coinfections related to tick borne infection.
Lyme disease and associated infections manifest as a multi-systemic illness that can result in symptoms affecting random parts of the body including the muscles, joints, organs, brain, gastro-intestinal and neurological systems. It is typically transmitted from the bite of a tick, although other insects have also been implicated.
Lyme disease is generally categorised into acute (early) and chronic (late) stages of disease each with varying symptoms. Most diagnosed cases in Australia have progressed to the late stage because there are no early intervention strategies in place to ensure appropriate treatment following tick bites.
Symptoms in early stage Lyme disease (close to the time of the bite) commonly include: flu-like symptoms, headaches, fever, swollen lymph nodes, fatigue, muscle aches and joint pain. With the stealth pathogens capable of penetrating cells, bone, brain and organs, later stage symptoms are typically varied and severe causing significant morbidity and lowered quality of life. (http://www.lymedisease.org.au/
Lyme has been linked to serious diseases such as Alzheimer’s, motor neurone disease, blindness and spontaneous cardiac death due to Lyme carditis.
Lyme Disease is an invisible disability. It is a life-altering illness and, like most chronic illnesses, it is a roller coaster of "okay" days and bad days. You can look and feel fine one day and wake up the next morning feeling like death. There is always a price to pay for overdoing on a "good" day, making it impossible to make plans in advance.
Some of you may have heard of this insidious disease or know someone that has suffered, although I wouldn’t blame you if you didn’t. Despite thousands of people having positive test results, Lyme is still something that is considered not to exist in Australia. This means despite being debilitated from this disease, treatment is not covered by the Australian government or private health insurers or life insurance. The whole financial burden falls to us. We have spent tens of thousands of dollars trying to diagnose and treat my many health issues. Much of the time being told I have other conditions, it’s all in my head or to just take medication. There are many reported cases of deaths associated with Lyme due to its ability to affect the entire body. Recently the government has given a grant to Murdoch University to conduct studies into tick borne disease in Australia so hopefully there will be more awareness and support for future victims.
Lyme bacteria can bore their way into tissues and organs, causing literally hundreds of symptoms. Below is a list summarising some of the symptoms I experience and conditions I’ve been diagnosed with, by no means is this a comprehensive list as I simply can’t remember it all.
This is very difficult for me but here goes, the uncomfortable and embarrassing symptoms I try to hide as best I can from everyone laid out in black and white;
I am constantly experiencing in some form multiple of the following symptoms;
-difficulty maintain healthy weight
-changes in appetite
- itchy agitated eyes, floaters, blurry vision, loss of peripheral vision
-sensitive to light
- hair stopped growing on much of body
- losing hair on head
-itchy flaky scalp
-rashes, welts, blisters on chest, abdomen hands and feet
-sore soles of feet particularly upon rising
-swollen eyelids in morning
-facial muscle twitching and spasm
-confusion, difficulty thinking and making decisions
-difficulty with concentration and reading
-poor short-term memory
-hypersensitivity to heat and cold
-red facial rash from sun exposure
-frequent periods of diarrhoea and constipation with bleeding
-sore throat, hoarse voice
- sensitivity to smells and sounds
- debilitating joint pain and swelling that migrates through body including knees, fingers, ribs
-stiff and sore neck
- over tender/sensitive skin if poked or grabbed
-low iron, B12, vitamin D and other vitamins and minerals
-muscle cramps and spasms
- varying heart rate between very high and very low
-blood pressure drops when I stand
-dizziness, fainting, lightheaded
-muscle fatigue, weakness
-difficulty getting to sleep
-sweating excessively or sometimes not at all despite exercise
-rosacea/very red in face
-chest and left arm pain
-developed reaction to alcohol rash on face, neck and chest
-recurring UTIs, kidney infections, yeast/thrush infections
-extremely heavy and painful period
-brain fog, forgetfulness, difficulty concentrating
-headaches and migraines
-ear and jaw pain
-extremely tight and swollen calves
-extremely tight and sore muscles
-odd allergies, swollen ears, hives and anaphylaxis
-skin sensitive to sun
-severe motion sickness
-low vitamins despite supplementation
- restless legs, poor circulation in hands and feet
-swelling of hands, feet and calves upon exercise
-extreme pain when sitting or standing for too long
List of medical conditions diagnosed with;
- chronic fatigue
- Hiatus Hernia
- grade A oesophagitis
- degenerative retinal lattice and pigmentation
- Right bundle branch block
- heart murmur
- benign atrial arrhythmia
- localised pathology of median nerve (arm) affecting the motor branch on the left
- 50% stenosis of the proximal common femoral arteries.
- compartment pressure syndrome in lower limbs
- depression, anxiety and PTSD
- vocal chords nodules
-Complex Regional Pain Syndrome
-previous Typhoid infection including peritonitis, septicaemia and meningitis
- previous diagnosis of PCOS
- previous insulin resistance (took Metformin)
It has also been suggested I have Rheumatoid Arthritis, Lupus, other immune diseases and further neurological problems although I am not currently receiving treatment for these particular conditions.
Due to the chronic nature of my infection and that is affecting almost every system in my body including the eyes, heart and brain my only choice is to seek treatment outside Australia. I have been booked into the St. Georg Klinik in Germany and will leave in late April for immediate treatment. I will be there for 3-4 weeks undergoing intensive specialized hyperthermia treatments. To achieve Thermoeradication of the bacteria, my body temperature will be raised to 41.7-42 degrees. Over more than a decade of treatments and thousands of patients at this hospital, people have shown eradication of the Lyme bacteria (Borrelia) from the body. I will also be undergoing an accelerated detoxification and repair treatment to flush neurotoxins out of my body after the Lyme bacteria is killed. I will also be treated with IV antibiotics, vitamins, undergo physical therapy and Drs there will begin the process of addressing repair of my mitochondria, Thyroid, Hormones and other effected organs. This healing process and long term medication will continue when I ‘m back home.
I understand everyone has their own problems and plans but we desperately need help. The money we are trying to raise includes 3-4 weeks treatment in Germany, room and board for both Brett and I, business class flight (for me) as I am unable to fly this distance economy due to my worsening medical issues and pain. It also includes an amount to cover the time both Brett and I will be absent from work and time off I’ll have to have without pay or to purchase leave. I also have to have another 2 week FMT (faecal microbiome transplant) with the Centre for Digestive Diseases as soon as we return to ensure my immune system and body can recover. We will need to continue with medication and treatment for a long time once I return home, this also makes working full time uncertain.
I appreciate the time you have taken to read all this if you have gotten this far. I thank you for the bottom of my heart if you are able to assist us with donations or simply by sharing my campaign and story.
Love Rachel xox