‘How to heal Chronic Lyme Disease’, ‘Lyme Disease Recovery Stories’, ‘Chronic Fatigue Recovery’, ‘Chronic Fatigue Syndrome causes’ – if you looked up my google search history for a few years in my 20’s it would have been all about this! I was struggling with many different symptoms and was desperate for relief.

In this post I am going to share all the treatment I did, and how I ended up coming to the conclusion that the root cause of all my issues were not infection but were a result of a dysregulated nervous system. I understand that for those deeply involved in the Lyme community, where patients struggle relentlessly to have their infection acknowledged, my eventual realisation that Lyme disease was not the root cause of my symptoms may be as unsettling for you as it was for me when brain retraining was first recommended. However, I encourage you to stay with me and read through my experience.

This is only my own experience and thoughts, I am not a medical practitioner and I am not giving any advice, simply sharing my own experiences.

Diagnosis

After approximately two years of going from doctor to doctor and being given the label Chronic Fatigue Syndrome/Myalgic Encephalitis I was diagnosed with Lyme Disease. I had blood tests done in Australia and some sent to IGENEX in the US and they both came back positive for borrelia. I also had a positive for babesia and rickettsia. I did not have a positive for bartonella although I had a bartonella rash on my hips and back.

Antibiotics/Herbals/Active Infection Treatment

I did approximately 6 years of antibiotics. At first I rotated with oral antibiotics including doxycycline, rifampicin, amoxicillin, metronidazole, plus various others whose names I forget now. I also did Bicillin injections, were always making sure to have antibiotics to cover the three forms of borrelia plus the coinfections. At one point I think I remember I was on 6 antibiotics at once, looking back that seems so crazy to me!

Eventually I was not improving so I started doing IV antibiotics as well as IV nutrients such as Vitamin C, glutathione, Phosphatidyl Choline and B vitamins. I did IV ceftraxione, azithomycin and metronidazole. I ended up having a portacath inserted and self administered these IVs. I had my portacath for about 4 years and did IVs on and off during this time, with at least 3 years of IV antibiotics.

I did rounds of disulfuram for over a year in 2020. In addition to this I saw various naturopaths as well as Klinghardt trained practitioners who administered herbal regimes that I often used alongside antibiotics.

As you can see my treatment involved a LOT of actively treating infections, if you asked me at the time I would have said that this was essential. I was very pro long term infection treatment. All of this treatment would make me ‘herx’ and very, very sick. At the time, I truly believed the sicker the treatment make me, the better I would feel as I believed this meant infections were dying, I never shied away from anything that made me herx, and pushed my poor body to its limit.

I did experience improvements from the antibiotics and infection treatment. These took a very long time to achieve and had a lot of side effects. Despite years of this treatment, I was still experiencing many symptoms and unable to work, but this approach took me from bed bound to housebound to eventually being able to leave the house.

Holistic and Supportive Therapies

I saw countless doctors and naturopaths during my time unwell and had a holistic approach to treatment. Below I have listed some of the treatments I did, this list isn’t exhaustive as I did so many different treatments over the years that it is hard to remember them all.

• Tried multiple diets: low histamine, paleo, low salicylate, keto, anti-candida. Completely removed any processed foods from my diet and focused on low inflammatory foods that were easy to digest. Lots of bone broth, chicken livers, homemade kefir etc
• Comprehensive stool tests and various treatments for intestinal microbiome imbalances, including herbs for SIBO, and many many rounds of anti-fungals for candida
• Did the Organic Acids Test and implemented changes from that
• Consulted with naturopaths who specialised in genetic testing and worked on MTHFR genes and gave me an individualised detox protocol. I also had a remote appointment with a Doctor in the United States who specialised in interpreting genetic test results
• Completed ART testing with Klinghardt trained practitioners and implemented their treatments
• Had our house tested for mould, and we had the entire sub-flooring replaced in parts of the house. Purchased air filters, and ensured my environment was mould free
• Treated my TMJ with a holistic dentist. I wear a splint at night called a SOMA to improve my mouth breathing and jaw alignment
• Saw two naturopaths who used kinesiology and Asyra testing to diagnose and treat me for various infections
• Saw various acupuncturists and did rounds of Traditional Chinese Medicine
• Did regular colonics and coffee enemas to support my detoxification protocols
• Had an infrared sauna put into our home that I used to support my detox
• I tried countless natural supportive therapies, herbs and supplements to help rebalance my hormones as I had debilitating pain around my periods, I also used compounded progesterone for a few years to try and support these
• Starting seeing an osteopath regularly to help support my body holistically, he has helped treat my periods with a massage technique that has significantly improved my period pain
• Semi-regular lymph drainage massages
• Throughout a lot of my treatment I was taking over 50 tablets a day

Hyperthermia Treatment

I did Hyperthermia treatment in Malaysia in 2017 and then again in Germany in 2022.

When I went to Malaysia in 2017 I was very sick, I needed a wheelchair to get me through the airport. The most debilitating symptom I had was severe brain fog and cognitive disfunction. It’s hard to describe how it felt, but I used to say ‘I feel like my brain is in the next room’. Being in conversations took so much mental energy and my cognition was very slow. I would also have this pressure in my head or ‘brain pain’, it is a feeling that is very hard to describe but was probably my worst one. After I did hyperthermia in Malaysia I felt a dramatic improvement, especially in my ability to think and feel present, however I was still extremely sick after the treatment with a very poor quality of life. It was not a silver bullet, but of all the Lyme treatment I did, it lead to the quickest change. The treatment itself is very, very intense on the body and involves heating the body up to 42 degrees celsius and has many risks.

Note: I do not know if Hyperthermia treatment in Malaysia is still available but I DO NOT recommend. I know an Australian patient who very tragically lost her life from this treatment.

In early 2022 I was getting fed up with my progress, I was living out of home, and by then JUST had enough energy to take care of myself and live independently. I was not working, but had a little hobby business I spent a few hours on a week, and spent many days in bed and with lots of symptoms. Because of this I decided to go to Germany to do Hyperthermia at St Georg Klinik. This lead to some improvement but it wasn’t as dramatic as my improvement in Malaysia, I guess because I was less sick.

I remember waking up in Germany after the treatment and feeling a bit more ease in my brain. I also felt motivated about life for the first time in a LONG time! Some of the fog had lifted and I didn’t feel so heavy and uninspired.

Plasmapheresis

After hyperthermia at St Georg Klinik I had a few rounds of plasmapheresis at the Kubler Klinik in Munich. I chose to go here instead of the St Georg Klinik because of some posts I had read on a Facebook Group I was in at the time. I have no idea how much this treatment helped me but seeing how clouded my plasma was and watching the cleaner plasma put back into my body was satisfying.

Nervous System Regulation

Eventually I started to feel like I was playing ‘whack-a-mole’ on the infections in my body. I would get on top of borrelia and then my doctor would say I needed anti-virals or I needed something for candida or a different antibiotic for another infection. It felt like it was never ending. I really started to wonder why my body was so susceptible to letting all of these infections flourish, I had been on long term antibiotics and I wanted to get off them, I knew I was suppressing my immune system by being on all of them.

I also never understood why other people can be positive for these infections and have zero symptoms, or why you could live your whole life in the same home, and all of a sudden it’s too mouldy for you. I felt like something must be going wrong in the body, not externally. I felt like I was always jumping down these rabbit-holes and doing treatments fuelled by fear but there there seemed to be something missing. I was on strict diets, incredibly diligent with my healing, never skipping my IVs or supplements, and still I had so many symptoms.

Around this time the idea of brain retraining and nervous system regulation kept coming up. A few other patients had mentioned it to me, and I had started to notice my body’s inability to cope with the slightest bit of stress. I also suffered from a concussion at this time and overnight lots of symptoms resurfaced, I wondered why so many symptoms I had tied to long term infection could flare in this way overnight.

I had heard of DNRS many years prior but didn’t understand how it worked and so I was incorrectly opposed to it. In mid 2022 I had changed doctors to one who treated Lyme patients but without long term antibiotics because I felt I wasn’t truly being holistic enough in my approach to treatment. Not long after I started seeing her, she ran a presentation with a recovered patient who had used brain retraining to heal symptoms very similar to mine! This became the inspiration for me to start DNRS.

For me, regulating my nervous system is how I am healing all of my symptoms. I was explaining nervous system regulation to my cousin recently and she said, “wow, you had to completely change your entire way of thinking”, and it’s very true! I think that’s why a lot of us ignore nervous system regulation as a healing tool, because our minds are so ingrained with what we have been taught through integrative medicine. It is truly the missing piece of the puzzle for me, and explains so many symptoms and experiences I had. I actually don’t personally identify with the label of ‘Lyme’ or ‘Chronic Fatigue’ anymore, but only refer to it on my blog as I am writing for those who do and who are on the treatment merry-go-round that I experienced. I have written about improvements I have had from brain-retraining here. To me, a dysregulated nervous system is the root cause of all my symptoms, not infection like I had previously believed.

Did I only improve because I had done all the physical work and reduced my infectious load and was the nervous system regulation the final puzzle piece? Was I only able to do DNRS because I needed the other treatments to get me to a place where I was ready? These are questions I do not know the answer to, but one thing I am certain of is that nervous system regulation is POWERFUL and can be beneficial to almost everyone. I have seen people recover from chronic Lyme using brain retraining alone and I do believe that it is possible. In my case, maybe I needed all the other treatments to get me ready to commit to brain retraining. I will never know. But I do know it came to me at the right time and with it I have full confidence I will be back to 100% in time (& in some ways even healthier than I was pre-illness).

I still see an integrative doctor and use food as medicine and a holistic approach to support my health, and I believe that this is a really important part of healing. I do some supportive therapies as well such as osteopathy and lymph drainage massages. My relationship to these healing modalities has changed, whereas I used to have a fear-based NEED for these therapies, I now see them as extra support as my nervous system heals, which is my main focus.

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