Linda's Lyme Disease treatment
Hi all, as many of you know I have been very unwell for a year now as a result of being bitten by a tick whilst on a retreat in rural Northern California and contracting Lyme disease.
As Lyme Disease is not yet recognised as existing in this country by the Australian Government, I did not receive an accurate diagnosis for 8 months even though I saw 10 different specialists for my many and varied ailments.
My symptoms have included extreme/chronic fatigue (I was bed bound for 3 months, only venturing out of the house to be driven by my mother to doctors appointments), severe body wide muscle pain, brain fog/haziness, cognitive issues (e.g. general short term memory difficulties, word and name finding issues, concentration and reading problems), severe abdominal pains/spasms and other gut issues (which led to me wrongly undergoing an appendectomy last October), thyroid issues (Lyme triggered an auto-immune disease in me called Hashimotos Thyroiditis), other hormonal issues, breathing difficulties, muscle twitches, muscle weakness, hair loss, skin issues and the list goes on!
Basically, I went from being a happy, outgoing, determined, hard working and independant woman who was in the final year of her Doctorate of Clinical Psychology, to a woman who could barely leave her bedroom for months and had to move back in with her parents so her mother could become her 24 hour carer.
Due to the lack of knowledge in this country about this serious and multi-systemic disease, we had to pay $1500 just to send a blood test over to the USA in order to receive an accurate test result (the testing in Australia currently produces a false negative 50% of the time). This test was ordered by an Integrative GP who was the one to finally diagnose my Lyme disease. I am incredibly grateful to this amazing doctor, however her fees alone(most sessions cost $500) with all of the blood tests and supplements she prescribed for me have been incredibly expensive. In addition, because of my extreme pain I spent the best part of a year trying many different allied health therapies to get any relief possible such as accupuncture, massage, physiotherapy, hypnotherapy, hydrotherapy, and naturopathy/homeopathy. Despite all the help from this wonderful team of clinicians, I did not improve very much and once diagnosed I began an intensive protocol of herbal antimicrobials, oral and IV antibiotics daily (through a PICC line that was inserted into my arm and is still there) in order to try to kill the Lyme as well as 2 coinfections that the same tick had given me, Bartonella and Babesia (a cousin of malaria). I saw little improvement on this protocol and I was told I would need to continue high dose multiple antibiotics for 1-2 years with absolutely no guarantee that I would get well and stay well after this time due to very insidious and clever nature of Lyme/Borrelia.
You see, this organism - the spirochete- can morph into 3 different forms in the body and is incredibly good at hiding when being attacked by antibiotics. Sound like a science fiction story yet? Sadly, it is not, and due to the lack of knowledge in this country I (and so many others who have also suffered with Lyme disease) have had to do an enormous amount of our own research and in many ways direct our own therapy/be our own doctors.
I finally realised that there had to be a better way to treat my Lyme and coinfections and so when I heard about an innovative treatment at a hospital in Germany for Lyme I knew intuitively this was what I had to do even though it was going to cost over $20,000 for the treatment program and flights for both my mother and I, as well as accomodation for my mother. I was also very scared that if I didn't treat this illness aggressively and fast I would end up in a wheelchair with paralysis or with seizures multiple times a day doing even more damage to my brain, like others I had met here with Lyme had experienced as their Lyme progressed.
In mid July I somehow made it on a plane with the help of my mother and begun a very intensive 2 week protocol at the amazing German hospital which I am so so thankful for. This program included antibiotics intraveneously 3 times a day, IV vitamins, ozone therapy, multiple other holistic therapies, detoxing, and most importantly 2 x 6 hour hyperthermia sessions wherein I was completely sedated. My body was heated up to a core temperature of 41.9 degrees and at the end of these 2 sessions I was told by my German doctors that they believed that they had killed all of the Borellia in this way (Lyme and coinfections hate the heat!) However, my German doctors also told me that it would take up to 6 months for my body to repair all the damage done to all the various systems in order to achieve a full recovery and that I needed to adhere to a 6 month post protocol.
This protocol involves having IV infusions (costing almost $500 per week), taking MANY supplements and prescription medications, and doing many different things to try to expel the toxins out of my body that the dead parasites have now left behind. Except for some of the prescription medications, none of this is covered by medicare. (The picture below is only of the non-prescription items, and about half of what I take altogether each day).
Unfortunately this is all proving to be much more expensive than we expected and we are very much struggling to pay for these things now in addition to rehabilitative physiotherapy and other body work for my ongoing muscle weakness and immense body wide pain. Due to the fact that I was still a student pre Lyme I had no money saved up and I have been unable to do any paid work at all for a year now (I was doing some casual teaching work on the side pre Lyme). My parents have already paid approximately $80,000 for my treatment to date, which none of us ever anticipated would happen.
Whilst I am still extremely hopeful that I will make a full recovery eventually, at present I still also have chronic fatigue, brain fog and many other symptoms that I had prior to going to Germany. I know I need to stay positive (and I definitely am) and continue to persevere with all of my treatments now, however the financial stress is making it very difficult for me to adhere to the post protocol as fully as I would like. It is also putting so much stress on my family and literally beginning to tear it apart which is completely breaking my heart. I try not to feel guilty about this because I know guilt is not very conducive to healing in a holistic sense, but there is immense sadness that comes with seeing your family severely emotionally and financially effected by your illness.
I have always realllly struggled to ask others for help and now is no exception. However, I have realised that one of the many life lessons that I am being forced to learn through this chronic illness is to ask for assistance during my times of need and to receive with open arms. Being this unwell has taught me so much and it is my dream to finish my final year of my psychology doctorate as soon as possible and to go on to work with people with chronic illnesses, particularly Lyme disease, including people with chronic pain. I feel that the emotional toll that this disease takes on sufferers and their families is huge and it is my hope that I can soon help other people to find meaning and purpose in their health journeys and to help them cope with the various manifestations of this serious disease. It is also my goal to continue to create as much awareness around Lyme disease as possible so that hopefully one day there will be MUCH better testing, quicker diagnosis and superior treatment available in Australia. The fact that all the Lyme sufferers in this country that I know have had to fight to be correctly diagnosed and to even be treated at all is atrocious and I am now passionate about doing all I can to help change this state of affairs.
But I need your help in order to be well enough to make these dreams (and all of my other dreams- i have so many) come true. So if you feel to, please donate absolutely anything you can, no matter how small the amount, and I promise to pay it forward as much as I can when I am well. You can make a donation from anywhere in the world and I will also donate $500 worth of the funds raised to be split between the Lyme Disease Association of Australia ( www.lymedisease.org.au) and the yet to be built Grace Health Institute for Lyme sufferers.
Wishing you all abundant health, happiness and love.
'Health is the greatest gift and contentment the greatest wealth' (Anon)
On top of this, the most devastating part for me though is that the aggressive treatment I had ended up triggering issues with my heart which I have been trying to address without success for the last 6 months since I've been back in Oz. I've seen a cardiologist, 2 neurologists, and an endocrinologist here and tried 5 different medications but nothing is helping to settle down my tachycardia which is worst upon sitting or standing. The condition is known as 'POTS' and many with lyme have these extra cluster of symptoms, I just never did before. It is causing me to have extreme fatigue again and I spend most of my day lying down in bed which unfortunately is making me more deconditioned and making my body like gravity less and less. But it feels like a vicious cycle at the moment. At this point I feel like my only hope at trying to get rid of or at least better manage this additional debilitating condition I now have is to go back and see my Lyme Dr in the USA again. My grandmother (bless her soul) is willing to come with me as my carer (even though she is 86 and just lost my grandpa recently) but I am afraid that we will not have enough money to make it through the 2 weeks of treatment there which is, ofcourse like all lyme treatments, very expensive and not covered by any form of insurance.
Whilst I'm very thankful that there are still a few lyme drs left in australia who havent yet been banned from treating lyme disease, their major arsenal is oral and/or Iv antibiotics and it just seems like my body is too weak now to do more of those as my Lyme dr in sydney has suggested and the heart and BP medications he has suggested to date have also not worked for me. For this reason I have started live bee venom therapy which my dr in the USA is in support of as this is how he cured himself and his family of lyme disease many yrs ago (I need to work up to 10 stings 3 times per week- ouch i know!) to try get rid of the rest of my infections, but I don't know if it will help with my heart stuff which my syd lyme dr describes as 'damage'. I believe that there must be away to heal this damage though or at least better manage it so that I can be functional again and still have a chance at finishing my psychology doctorate (I have to fight for the right to do so with my university at the end of July who are wanting to kick me out because I still haven't been able to finish my final placement). I am still so determined to get well and be able to help others with the psychological consequences of this horrific illness. I also dream of being able to get married and have a family of my own too, to be able to go out and socialize, dance salsa again, and so much more! I am 34 in July and I know that time is not on my side now for many reasons though.
It's for this reason that I am asking if you can to please donate, even $5 or $10, so that I can get as much treatment as possible over at the Sophia Health Institute in Seattle this month and stay for 2 weeks rather than only 1. Honestly every little bit really does count. I am meant to be heading over there in a weeks time and as it is I will be spending the last bit of my grandparents savings to do so (my family has already spent over $250,000 since i contracted Lyme in the USA almost 3 yrs ago). Its still so hard to ask for me to ask for help, but my desire to be able to participate in life again and to thrive, rather than just try to survive each day minute to minute and watch it pass me by whilst i sit on the sidelines, is so strong that I have decided to swallow my pride and reach out once again.
The hardest part about having an invisible illness is that I look well to others, but just to give you an eg, after my sister's recent wedding (the first time in yrs I had my hair and make up done) I slept 29 hrs straight and had immense pain for weeks afterwards because I dared to dance with her just a little bit and ignore my disease for a day. I completely understand if you cannot give any more at this time, sharing this post though really helps too. It is all so so appreciated and it also boosts my morale to know that people out there still care. I really hope you are all doing really well and having a fantastic 2016 this year. That you are happy, healthy, living on purpose and having the life you deserve. Linda :)x
I'm also still determined to try to help others as much as possible in the future who are going through this same ordeal. No one should have to spend their parent's and grandparent's life savings seeking treatments abroad for a disease that isnt even acknowledged in their home country. I'm hoping that by being public about my struggles that I have helped to spread awareness and I hope to be able to help console and give hope, advice and encouragement to others who need it. Every little donation helps heaps as does even just sharing this post. Wishing you all so much health, joy and love and a very happy festive season! Thank you soo much again to all those who have donated to me thus far. You'll never know just how much it has meant to me x