Every May, I spend the month trying to educate others on Lyme Disease and other tick-borne illnesses. As with every other year, I will be putting up blog posts that relate to tick-borne illness and running two giveaways on instagram – one beauty package that is open internationally and one nail polish package that is open to Australian residents only due to postage restrictions. I have some amazing donations that you can win (the Aus Indie polish community has come through again this year – got to love them), so keep an eye on my instagram for that to launch.
If you have spent any time on my blog, you will have noticed that my health is so bad now that it affects everything I do. I have had to stop work, university and really any form of socialisation because I am too sick to do so. I am stubbornly holding on to this blog as it is my only escape from the daily suffering that I go through. I have spent so many years trying to get on top of this illness but nothing has worked. Unfortunately, the Australian government do not allow treatment for tick borne illnesses so the only hope of recovery is to go overseas and get treatment. I have finally built up the courage to launch a fundraiser so that I can go overseas and receive lifesaving treatment but it will take a very long time to raise the money as it will cost $22,000 aud. Donations have already started to come in and it is so heartwarming to see the generosity of so many people. I don’t feel worthy, but I also know this is the only way I can bet better. I really appreciate those of you who have helped me.
I wrote up a detailed summary of my illness but I could only include a small portion of it on the fundraising site, so I will include the whole version here for you to read. My mum wrote the introductory paragraph, and is helping me organise the fundraising.
“My daughter Alinta was bitten by a tick at the age of 10, she is now 27 and severely ill but needs your help to get better. She has been diagnosed with Late Stage Neurological Lyme Disease and Bartonella infections. Both are bacterial infections that infect the whole body including the brain. The government in Australia won’t allow treatment for these illnesses so she must go overseas to get treatment to save her life. It is heartbreaking as a mother to see your daughter suffer so much and not be able to help. I have shed many tears at her plight and my only wish is for her to have a chance at a healthy life. Despite being so ill, she still foster’s death row dogs for a dog rescue charity. She also dreams of eventually being able to help those living in poverty and repair the environment. I know she will do great things, but more importantly, I just want her to be happy and healthy. She has spent some time writing up all the details of her illness and the required treatment. Please see below:
It all started at the age of 10 when I was practicing gymnastics on the carpet of our holiday accommodation in Mallacoota, Victoria. I unfortunately picked up a paralysis tick that attached to my head. We didn’t realise it was there until I started getting a headache. Once found it was already very engorged and so my parents removed it, but at the time we had no idea about tick-borne illnesses let alone the best method of removal for ticks. Over the next few years there were signs of illness but it wasn’t until my last year of secondary school that I became very ill. There were so many factors at the time that would have weakened my immune system and allowed the bacteria to take hold. The first symptom was severe fatigue. I had always been a good student but I suddenly had to drop an entire year 12 subject as I was just too tired to keep up with the course load. At the time it was devastating, but there was a lot worse to come. I eventually got diagnosed with Chronic Fatigue Syndrome and was told to keep pushing through, so that’s what I did. I was accepted into a double degree at university and used every ounce of my energy to keep pushing. It meant I would go to uni and come home and sleep and get up and do it again, but that is what a medical professional had told me to do. Unfortunately, getting the wrong diagnosis meant I was also given the wrong advice and pushing through was the worst thing I could have done. My body began to deteriorate rapidly. I suddenly had pain everywhere, from bones, to muscle to skin and nerves. But the biggest blow came when I started to lose my cognitive function. I have always loved thinking and learning but I could barely focus for 5 minutes during lectures, let alone, take in the information in and use it for the assignments. It became so bad that I had to give up on my very last subject of my double degree. The degrees that I had fought so hard for and been driven to complete. Staff at the university commented on how they hadn’t ever seen someone so determined to get through, but determination doesn’t hold up against a body that is falling to pieces.
I knew there had to be more to the illness at that stage. The symptoms had become so debilitating so I needed answers. It turned out that instead of Chronic Fatigue Syndrome and Fibromyalgia that I had previously been diagnosed with, I instead had Lyme Disease and Bartonella infections. Everything started to make sense then. All the separate diagnoses and symptoms I had experienced could be tracked back to that one tick bite. By the time of my diagnosis I was classed as having Late Stage Neurological Lyme Disease as the bacteria had well and truly entered my brain causing havoc. Despite that, doctors were still able to see that I was fighting really hard. One in particular said that he knew I was working very hard on my mental wellbeing as Bartonella is notorious for infecting the mood control part of the brain. I confessed that the depression, anxiety, irritability and bouts of random anger were becoming much harder to control, but he said that I was doing very well considering how bad the Bartonella infection had become. I can’t say I agree with him, because I feel like I lose a small part of myself and my mind every single day. I am desperately clutching on to the small part of me that is left but it continues to get smaller. I miss being able to enjoy life and laugh and just be me. But that is too hard to do with the suffering I go through daily.
I need at the very least, 12 hours of sleep a day or I cannot function. I often sleep for 18 hours, but I still wake up just as tired as I was when I went to sleep. It is at the point now where I can’t remember what it actually feels like to be well rested and have energy. I only know how to try and fight through the exhaustion until my body gives up and collapses under me. Any amount of physical or emotional output results in post-exertional malaise which means I can take many days to recover from trying to do something small that a healthy person would have no trouble doing. I often have to make choices like if I want to shower or eat as I don’t have the energy to do both in one day. I take multiple pain killers, but I still deal with excruciating pain on a daily basis. I have throbbing bone pain, tearing muscle pain, burning skin pain and electric shock nerve pain. I have been through pain management clinics but there is only so much I can do to try and cope with such overwhelming pain. The muscles in my body frequently spasm, shake and jerk which has caused extra pain due to Myofascial Pain Syndrome. Joint hypermobility has caused a lot of joint dislocations and painful bursitis in both hips which was only made worse by cortisone injections. I have jaw pain, Temporomandibular Joint Disorder (TMJ), as well as facial spasms, drooping and facial pain. I suffer from regular headaches and migraines and struggle to focus my eyesight for any period of time. This has been diagnosed by specialists as extreme eye fatigue. Most days I cycle through severe sweating and shaking. I am unable to control my temperature even when the room temperature is stable. My heart and lungs are now showing signs of infection too. At times I struggle to breathe and find myself gasping for air. My heart rate is high and blood pressure low. Even after lying down resting for a long period of time, my heart rate is still well over 100 bpm. I have had many periods of hair loss, where my eyelashes, eyebrows and head hair fall out in chunks. When it does eventually grow back, it is obviously much weaker and thinner.
One of the very first symptoms that I had after the tick bite was digestive upset. The symptoms continued to get worse as the illness progressed so that now I have constant stomach pain and nausea, and I often vomit. If I don’t have access to Ondansetron (the only medication to help so far) then I lose weight rapidly. I have a lot of intestinal pain and can have cycles of diarrhea and constipation. I have been diagnosed with Gastritis and Irritable Bowel Syndrome (IBS) but it’s suspected that more is going on that they can’t diagnose with medicine at this time. The same uncertainty goes for my bladder and cervix. I have gone through bladder biopsies and botox injections to try and stop the pain and incontinence. The specialists believe that my body is attacking my bladder but the technology to prove it won’t exist for another 10-20 years. My body is at the point now where it attacks itself as it can’t recognise the bacteria. I have been diagnosed with Sjogren’s Syndrome, Grave’s Disease (a thyroid autoimmune condition) and I’m heading towards Addison’s Disease. I have been told to expect more autoimmune conditions if this infection doesn’t get controlled. Unfortunately, I am also prone to contracting any pathogen that I come in contact with. My immune system is weak, so even a simple cold can set me back months. SInce becoming sick, I have acquired allergies to things I was previously not allergic to (including anaphylaxis in some cases). My allergies now range from certain foods, to household products, to medications and even some vaccines. Along with pain and fatigue, cognitive function is one of the more debilitating symptoms. I have vague memories of having a clear brain where every thought wasn’t obscured by a thick fog – but those memories get more distant as each day passes. I miss being able to think, to learn, to not have to fumble through sentences constantly because I forget even the most basic of words.
I have thankfully had family help to be able to afford all the medications, appointments and general costs of being ill for so long. I currently see my doctor weekly, my osteopath fortnightly and numerous specialists. I have a long list of medications, procedures, surgeries and alternative treatments that I do to try and keep on top of my snowballing symptoms, but this illness is out of control. I desperately need to treat the cause but I can’t do that in Australia, so I need to raise money for overseas treatment. Treatment that will save my life.
I’ve recently found out about a clinic in Cyprus which offers a combination of Ozone therapy, and hyperbaric oxygen therapy (HBOT), to kill the bacteria, and give my immune system the boost it needs to get rid of this infection for good. The results of others in a similar situation to me who have gone for this treatment are extremely positive, and I hope to be able to join them on the road to recovery. I have researched many treatments and locations and this is the one that will suit me best. The problem is that it’s a long course of treatment, on the other side of the world, and as someone living week to week on a disability pension, there’s no way I can afford the costs myself. I will need to take a carer with me as the treatment is intensive, and I will need help to look after myself when I’m not at the clinic. The airfares, accommodation, transport, insurance, and the cost for the 6 weeks of treatment all add up, and I’ll need to raise $22,000 AUD just to cover it. This is not a holiday, I’ll be spending all day Monday to Saturday in the clinic, and my Sundays will most likely be spent asleep whilst my body recovers, before starting again. When I return home, the recovery will be long and hard. I will have to go through extensive rehabilitation to build up the muscles that have wasted away for years.
I can’t remember what it’s like to be pain free, I can’t remember what it’s like to wake up without feeling as though I have run a marathon. I can’t remember what it is like to think or even enjoy life, but I want to. I so desperately want to. I have a bucket list of experiences and goals that I want to do but unless I get over this, that will forever be a dream for another life.
I am continually getting sicker. I have a wheelchair to get around shopping centres and need help with things like grocery shopping. I recently had an episode where I was sweating so much that the sweat was dripping off every part of me, so I needed a shower. As soon as I got in the shower though, I experienced bronchial spasms where I couldn’t breathe, lost my hearing and vision, collapsed on the ground and experienced paralysis. I don’t want to go through that again (or something worse), but the only way to ensure that doesn’t happen is to treat the infections, and I have to go to Cyprus to do that.
Every donation no matter how small gets me closer to Cyprus, good health and a life. So any amount you can donate would mean the world to me. I know not everyone is in the position to donate, but please share my story. Prolonged severe illness has made me isolated so I don’t have a big social network to help out, please lend me yours, because your shares are really important.”
I made the url easy for the fundraiser if you want to share it – https://youcaring.com/Alinta
My suffering is why I spend every May educating others about tick borne illnesses. I don’t want anyone else to go through what I have have been through. All donations given through the fundraiser go directly to getting me the treatment I need in Cyprus. If you would like to instead support this blog then you can always use my affiliate links. When you click on one of my affiliate links and buy something, I get a very small percentage of that sale, but it doesn’t cost you anything extra. Anything I get from affiliate links goes straight back into this blog to keep and running and allow me to continue reviewing new products for you. Update affiliate links will always be in my Discounts Tab but I currently have affiliate links for Furless, Flora & Fauna, Nourished Life, 100% Pure, Sephora and Friendly Dog Collars (you can use the code ALINTA for 10% off Friendly Dog Collars). I completely understand if you can’t donate, I know not everyone is in the position to do so, but I appreciate those you can. I also appreciate every blog comment, like, share and any interaction I have with you all as it keeps me going on dark days.
Alinta I think you are so brave, keep up the fight and you will achieve your goals. You are blessed with an amazing family and friends who care greatly about you, keep moving forward, and bless you for your caring heart in educating others on this horrible disease. I have sent a special prayer to Maddie Cakes to be an extra angel for you and to keep you safe, you helped save her life and I am certain she will be there for you… ❤️️
Thanks so much Deb. I haven’t been able to look at stairs without hearing thumping since Maddie. She would sleep with me so at all hours of the day and night I would hear her thump up and down the stairs to my bedroom, as her cast was heavy so it bumped each step on the way. I can still remember the sound so clearly! Thank you for loving her until her last breathe (and beyond). I’m sure she will be happily looking down from heaven, a guardian angel for both of us 🙂
Hi Alinta, I’ve sat on my laptop with this comment box open trying to type something because I know I need to reply to this. I’ve been diagnosed with something called NDPH which is a diagnosis given when everything else is ruled out. There’s no treatment either. I’ve been reading a lot about lyme disease as there’s been so many stories of misdiagnosis and reading about this is like reading about myself. I’ve tried writing about my experience on my blog but I find it incredibly hard to focus and write all the details I want to include. I’m currently at uni and trying to hold back tears. But I’m now following your blog and just had to reply something, thank you for raising awareness!
I am so sorry you have been through something similar. It’s so hard to hear that others have suffered as I have. I got a “cluster migraine” diagnosis for all the head pain but really it was just a diagnosis to put it in a box so that doctors didn’t have to worry about it any more. Headaches and head pain are a big symptom for many with tick-borne illnesses unfortunately. Have you looked into that maybe being the cause for you? Once you get put into one of those exclusionary categories, you tend to get even less help as doctors just say that anything else you have is due to that diagnosis and you get ignored – so you really have to fight for your health sometimes. I shed many tears writing about my illness, and needed help to get it all down. It took a lot to get over my ego as admitting to having some of the symptoms is humiliating, but it’s my reality so I have to accept it at some point I guess – that’s still being worked on though. Thank you for leaving a comment, I really appreciate it. I don’t get to blog anywhere near as often as I want to but I so appreciate the people I connect with through it. I will definitely check out your blog. Nice to know someone out there understands what I go through xx
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