Recently I received a message from my good friend Kate, usually we just share funny puns but this message was very different.
We were working together when she first became sick.
I felt helpless as I witnessing this strong, independent, active, leader type woman very quickly fall victim to the tight hold of a debilitating, frightening and for a very long time undiagnosed disease. If I felt helpless I can not even start to imagine the helplessness she felt, as she began to experience the terrible, untalked about symptoms of what we later found out to be a type of Lyme's Disease. I remember waiting with her before her flight home, she had trouble stilling still at the best of times (an ex-PT/dietitian and a resort manager who would spend all day literally running around the resort) but this time it was different. Her restlessness came with a feeling of anxiety or dread and she was beginning, in waves, to lose control of her body (again something she has always been very in touch with). Between these 'convulsions', as we called them, because we didn't know what else to label it, she would apologise for scaring me and made jokes about it even though I knew she didn't feel like talking (always kind and funny in even very difficult circumstances)
That was in March.
Since then she had endured so many days of waking up and not being able to leave the confides of her room, weeks of being told by Doctors telling her she was not sick and it must be in her head, hours of lying in bed unable to move.
After months of waiting she has finally been able to fly to Malaysia to receive treatment but this comes with a very large expense and being unable to work due to her condition has made it very hard.
Luckly Kate has some wonderful people supporting her but she could use your support too.
If spreading awareness for this horrible disease is all that comes from this, I know that will make Kate very happy. But if you can help her receive the treatment she needs to possibly make her feel 'normal' again that will mean the world.
Here is the message Kate sent me and other loved ones explaining her current situation. (I'm sorry Kate, I understand it is very personal but only you can really explain what your going though)
"This time next week I will have started my first treatment in Johour Bahru in Malaysia with Dr Radzi for Lyme "like" disease at the JB oncology clinic (yes oncology, no I don't have cancer but it is as serious, believe it), although this is not the first treatment I have tried over the months of feeling like an absolute exhausted lump of death and a crazed paranoid schizophrenic, it's definitely worth a try, I know it seems quite extreme.... but what is going on inside me is extreme enough to drive me to try this, I want more than anything to be me again! Normal healthy me! And if you know me I don't do things in half's, and have done my research.
This treatment doesn't have a 100% success rate of cure (sorry if this disappoints) but it's meant to help ease the load of infectious substances in my entire body. It will help boost my immune system that has been scrambled by this infection, with a once off (maybe twice.. see how I go) medical procedure of heating up my body to 42° under anaesthetic to induce a "fake" fever to help fight the infection out of my deep tissue and brain, this is coupled with 7 days of IV antibiotics that is inhanced by the hyperthermia heat treatment along with IV vitamin therapy daily to help with immune and detoxification processes.
Can you believe they actually used to give people malaria to treat similar diseases to get the fevers high enough to kill other disease, what a trade off.
Why go overseas for this treatment you ask?? Well that's the disgusting part about the whole thing is it's not actually recognised as any kind of disease in Australia, unless you can prove it, therefore no treatment available for me.... Or alternatively if it gets bad enough with other infections and I go to ICU is probably the only way I can get IV antibiotics to try lightening my infectious load... Ironically I don't really want to test that theory, and have been lucky enough to stay "well" enough to avoid too many hospital visits and now to travel.
Mum and Troy are coming with me so I won't be alone and they will take care of me as they and everyone close to me has been over the last month's, I cannot thank them all enough as I'm quietly shitting myself.. and will feel forever indebted to them for the unconditional help and love while they have had to endure this incredible inconceivable inconvenience of a disease.
I cannot and will not feel like this anymore I have endured enough and I'm literally loosing my mind.... It's actually in my brain degrading my autonomic neurological function (swallowing, breathing, appetite, cognition, temp control, muscle control, heartrate.. etc) to be so debilitated, discouraged by medical professionals, depressed, deceived by my own body and totally unwell without having a wound or recognised test result to show you and make you see what this has done (maybe the 10kg+ I've lost or the tremors is the only physically visual thing people that haven't seen me in a while may notice) I'm totally and utterly done with it, if this works or not! I'm only looking forward now as this is all still so very strange of an experience I've had and watching my life in a fishbowl go from literally paradise to puss is completely a shit cruel life game I'm not willing to play anymore.
If you have any questions about anything or suggestions I'm open to them all, please feel free to add your two cents.
Other treatments and specialist I have seen and tried include:
Multiple Dr's, CT scan, MRI, infectious disease specialist, Naturopath, Chinese Medicine, Neurologists, Acupuncture, ear, nose and throat specialist, kinesiologists, 100's of supplements, TCM herbs, Igenex test, Neurolink, Chiropractor, Massage, a 7 day Health Retreat, infrared sauna, Salt baths, CBT and "mindfulness", Ultrasounds, clinical psychologist, ARRL lab test, ECG, IV vitamin therapy, Lyme literate Dr, Mould testing, heaps and heaps of blood tests.
Just to name a few!
So you can see why I'm tired and done with this whole process of being poked and prodded not to mention the tens of thousands spent and a lifestyle given away to get to where I'm at now. I still have day's that I don't believe this is my life or that I'm even as sick as I really am... But it is what it is and it's my reality right now.
So Off to Malaysia we go.
Love you xxx
I'll try to keep you updated as i go."
If you cannot donate of course that is fine, I just ask you to please send kind thought to Kate in a hope she has a speedy recovery.
Thank you so much,
Kate's very worried friend
PS. If you would like to learn more about Lyme's disease have a look at:
Or this Change.org petition is closed but explains the situation in Australia very well:
Informative documentaries can also be found on YouTube.
- Sar Van de ven
- Lucie Heyworth
- Christine Mulholland
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