“Never give up hope, there is always a way”.
As a holistic therapist (reflexology, Bowen, Reiki), I’ve always believed the body has the ability to heal itself given the right tools. This belief was initially tested in 2009 when I was diagnosed with Rheumatoid Arthritis (RA) which manifested shortly after being bitten badly by mosquitoes and sand flies when holidaying north of the Sunshine Coast. I set out on a mission to recover using dietary changes, supplements, complimentary therapies, and emotional healing. Although I used Prednisone on and off during this time, three and a half years later I was in clinical remission.
I started a support group locally to share what I had learnt, thinking I was infallible and had all the answers – OH HOW LITTLE I REALLY KNEW!
TRUDI’S LYME STORY
Early 2013, I became symptomatic once more; my mainly raw food diet with some protein, was not helping, I became constipated and nothing helped. Everything was hurting, my joints were continually swelling and flaring with migrating pain around my body. I was diagnosed with SIBO (small intestinal bacterial overgrowth) with my then naturopath who put me in the too hard basket because I did not respond to the treatment and said all my issues were emotional. THIS WAS NOT HELPFUL!
In February 2014, I was in a great deal of pain, I was completely OCD (obsessive compulsive disorder) about food, frightened to eat many foods because I thought they were causing me pain. I reluctantly started on methotrexate and plaquenil on the advice of my rheumatologist and for six months there was a small improvement, then I went downhill fast again. No-one was listening to me (familiar story), I could barely walk, move, sleep, the anxiety was terrible, and I felt so very toxic.
By January 2015, things were much worse. I had lost around 15kg plus, my muscles were wasting, I was even more OCD about food, (it felt like the only thing I could control, but in reality, my digestive system was so compromised I reacted to everything) and I mentioned to a friend it felt like I had things crawling under my skin. She found the details of a chronic disease clinic which I went to in March 2015; for the first time, a doctor actually listened to me in great detail, before referring me for intensive testing. The clinic also had a naturopath, part of the treatment process. The next six weeks I spent on food based cleansing and herbal liver detox herbs whilst waiting for test results, and felt the least toxic I had in a long time.
I was actually very shocked to discover, when the results came back in May 2015, that I had Lyme, Q Fever, Mycoplasma Pneumoniae and Bartonella. I can’t recall being bitten by a tick. Symptom onset began after the mosquito and sand fly bites and I believe the initial diagnosis of aggressive RA may well have been incorrect. I had no joint damage in three and a half years and even now, eight years on and despite two years with terrible pain, inflammation, swelling and illness, the joint damage is very minimal.
The diagnosis was a relief; I believed now I could start getting well again. WRONG!
I started on a very low dose of minocycline, once every three days, and built up to full dose over a period of weeks. By the time I was at full dose, I was in such excruciating pain (10 out of 10+, 24 hours a day, seven days a week), burning throughout my body, nerve, muscle and joint pain with flares on top, drenching sweats and no end in sight, my GP advised me to stop the antibiotics. It took me nine months to return to a place I had been when I first attended the clinic, such was the Herxheimer (herx) reaction and inflammatory storm the antibiotics created. It became evident antibiotics weren’t going to be the answer for me.
I continued to work with the naturopath I met at the clinic and started on anti-microbial herbs (approximately a month after stopping antibiotics) – the usual dose of 5ml, three times a day was still causing massive herxing, on top of the herxing I was still getting from the antibiotics, so I dropped down to 2.5ml split into three doses over the day. I followed food-based cleansing protocols, ate only cooked foods as my digestive system couldn’t break down anything else, took supplements to support all the gene mutations I had, as well as addressing other body systems, a little at a time and as my body could cope with.
THERE WAS A TIME DURING MY TREATMENT I FELT I WAS NEVER GOING TO GET WELL
I continued to deteriorate despite doing all these things, feeling more and more hopeless and helpless. In September 2015, my Lyme GP, with all the knowledge and skills, advised me my best chance for recovery was Hyperthermia treatment (HT) in Germany. I was devastated and cried for days. I joined a group to find out more about HT and found out that not all patients found the treatment successful. The cost of HT, plus ongoing costs after treatment, meant serious consideration. I also felt I was too ill to travel to Germany or to undergo such intensive treatment at that time. I chatted to my naturopath who agreed; my Lyme GP and naturopath had said they had never seen a patient have such an extreme reaction to antibiotics; my naturopath was always very honest, telling me it was very unusual to not have any improvements, and wasn’t entirely sure of the direction to take, but felt if we focused mainly on detoxification with minute doses of pulsed herbs, things would eventually begin to improve. Instead of Germany, I invested in a one person far infra-red sauna, which I feel was a significant part of my recovery along with the plan put in place by my naturopath.
The most important thing for me at this time was the ongoing support of my naturopath, and the belief that I would get well. Having that support and belief at a time when I truly thought I would never recover was priceless. I would have days when the pain dropped to a six or seven out of 10; every single time, I believed ‘This is it! This is the day I am starting to recover’, only to crash again within an hour or two. It’s amazing to me, that no matter how many times this happened, the hope and belief was always fresh, as if I’d never had the experience before.
At my lowest point, I had absolutely nothing left in me, I couldn’t think, worry, or focus on anything. Being in the most awful place imaginable, every day was about survival, and every day felt like a living death. All I could do was surrender to the process and allow/trust it would work. No positive feelings, no fight, just allowing. I believe when we surrender to ‘what is’, we give our body the permission it needs to start healing. It took a long few months for me to see results, but I am so grateful for the gift of surrender. To be able to let go and trust, gave me space to heal without expectation.
SMALL CHANGES TOWARDS WELLNESS BEGAN TO HAPPEN
At the beginning of January 2016, I began to have some small improvements. As well as following an exclusively naturopathic treatment for Lyme, my naturopath was happy for me to start Orencia (a recombinant DNA generated fusion protein used to treat the symptoms of RA and to prevent joint damage caused by these conditions) infusions, in order to reduce the pain and inflammation. Because of all the detoxing, herbs and supplementary support I’d been doing, I feel the Orencia was able to work. Had I tried it when I was very sick I would have been so immunosuppressed I shudder to think what might have happened.
Fast forward Two years from my initial visit to the clinic in March 2015. I am of course reluctant to shout my success from the roof tops, given I have done this once before with RA and then fell into the depths of despair! However, I consider the approach to treating my body as a whole, as well as addressing the Lyme and co-infections with pulsed treatment, weekly biofilm busting days and daily saunas for the first year (now three to four times week) an amazing success. I chose not to go to Germany – if my best chance of recovery didn’t work, what else was there? HT was something I could do down the track if I needed to.
MY MESSAGE TO THOSE PATIENTS CURRENTLY RESEARCHING TREATMENT PROTOCOLS
Everyone has to find their own treatment protocol; for me it was a mainly natural approach. I truly believe recovery is far more likely when a fully holistic approach is taken – with any chronic illness. I don’t know what the future holds for me, and although I may not necessarily be cured, the only pain or symptoms I currently have is in my hands. I am living a normal life again, something I never expected given how ill I was. I am so very grateful to my naturopath without whom, I probably wouldn’t still be here.
Never give up hope, there is always a way.
The symptoms I recall are:
TMJ pain (temporomandibular joint dysfunction) migrating joint pain and migrating joint flares on top including jaw becoming misaligned and difficulty eating, intercostal pain which made breathing feel like I was being crushed
Joint pain (all joints) and severe swelling in most joints
Intense food fears, resulting from how I was reacting to some foods; weight loss
Night sweats and burning fevers, blood felt like it was on fire
Blurry vision at times
Low body temperature, chilled to the bone during day
MTHFR (methylene-tetrahydrofolate reductase) and other gene mutations
Muscle and nerve pain and burning – mostly upper body
Crawling sensations under skin
Twitching and tremoring muscles
Short term memory issues
Struggled to walk
Needed help getting undressed and to shower
I could barely hold a mug with two hands and needed help at times cutting food
TREATMENT PROTOCOLS AND MEDICATIONS USED
(Details provided for informational purposes only, Lyme disease and co-infections requires individualised medicine. Please consult with your practitioner for what’s right for your situation).
Orencia infusion monthly
Methotrexate 10mg weekly – until December 2016
Plaquenil 400mg daily – now reduced to 200mg/day
Mirtazipine 15mg anti-depressant – used daily for around six months from September 2015 to help with sleep
Cannabis oil 1-2 drops/day for approximately six months
DHEA troche 20mg day
Vitex 2-4 day
Lyme herbs – taken week on, week off, after the first three to four months of continual use. I’m not exactly sure what was in these, but it was made up for me and called Core Lyme Herbs, plus Serrapeptase three times a day during Lyme week
Teasel drops used in place of Lyme herbs, week on, week off (continued Core Lyme Herbs on biofilm days)
Adrenal herbs as directed week on week off – again herbal prescription made up for me. I also used Metagenics Adrenotone
Liver and blood cleansing herbs – prescription adjusted at each consult
Mediherb P2 detox – liver and detox herbs and Metagenics silymarin IC when Mediherb P2 finished
Digestive bitters and apple cider vinegar, three times a day
Vegetarian enzymes, two to three times a day
Detox tea, three to four mugs a day, now drinking dandelion chai same amount
Thomsons Resveratrol, one per day
Metagenics Metagen Methyl Active/Metagen B12 every second day
Nascent iodine as directed
Bioceuticals Ultra Clean EPA/DHA plus, three times a day
Bio-Activ Vitamin C powder
Metagenics Ultra Flora SB Dysbiosis or Orthoplex SB Dysbiosis, morning
Metagenics Ultra Flora Restore or Orthoplex Multigen Biotic, night
Vitamin K powder
Metagenics Meta Pure EPA DHA (fish oil) 4.2ml each day
Biofilm days weekly – veggie enzymes and Hydrozyme, Serrapeptase, Metagenics Parex or Mediherb Bacto Cand GI (alternate weeks), apple cider vinegar and digestive bitters.
OTHER HELPFUL TREATMENTS
Sauna daily 30-35 minutes
Acupuncture three times each week for six weeks, then reduced to weekly and gradually reduced, now to monthly.