Dee’s Lyme journey: Was SOT the answer in the end?


By Dee Gozdecka

:DAA - Dee's Lyme story

I remember that late spring morning in 2014, when I woke up with a sharp pain on the left side of my chest. It was unusual and I could not move, but after a while it eased, and I finally got out of bed and started my day as usual. Over the next couple of days I developed a pressure in my chest that was a little concerning for an active, healthy eater, aged 34.

I attributed that to stress in my personal life, following a recent miscarriage and subsequent disintegration of my personal relationship. I remember wondering whether one could develop heart problems as a literal consequence of a more metaphorical broken heart. It was a silly thought, but I went for a check-up. The test showed a slight tachycardic rhythm, but no major concerns.

Image: Dee in good health, 2022

So, as a busy person I continued with my regular life, hoping it would ease with time. Unfortunately, the symptoms did not improve and instead became progressively worse by the day. The stairs to the bedroom in my tiny two-storey townhouse were becoming a major obstacle. I was beginning to struggle with the walk up one flight of stairs and had to stop at least once mid-flight. Then one morning in early December I woke up with a major headache.

I had rarely experienced headaches before this, but I took Panadol and waited for it to ease. It did not. Instead, the following day the headache got worse. I was becoming quite concerned but could not put my finger on what was wrong. I still thought it related to my personal trauma and attributed my declining health to my emotional state at the time. The recognition that something was truly wrong occurred only a few days later. One morning I woke up and could not feel my feet.

It took a long while before I could feel my feet again, and once I could I had a sensation of pins and needles that did not go away. Then the next day I could feel the same sensation in my hands. There were suddenly too many things happening all at once for it to be stress related. My thoughts quickly jumped to a holiday 5 weeks back and a tick bite I experienced while spending some time on the coast. I noticed the tick quickly and pulled it out before it managed to attach itself firmly.

The reality of having Lyme in Australia

Having been born in Poland and having lived in Finland most of my life, I was a Lyme literate patient so to say. My mother’s physician had died of encephalitis caused by a tick bite about a decade earlier. Having lived in areas dominated by forests that were full of ticks, I grew up with knowledge of tick prevention and with the awareness that ticks can cause serious diseases. Prior to moving to Australia, I had heard many doctors in Finland warning of ticks and encouraging people to get help quickly. Thus, my immediate instinct was not to wait any longer but to immediately seek help for the tick bite.

I no longer remember whether I was more in a state of disbelief or shock when I realised Australian health authorities assumed tick-borne illnesses did not exist here. I could not comprehend how a well-documented illness, which I had heard a lot about where I grew up and where I had lived before, could be dismissed as simply non-existent. The extent of denial was unfathomable and sent me into a mild state of panic. But as symptoms increased by the day, involving shaking hands, loss of ability to grip things, difficulty focussing and relentless pain in my chest, I was determined to seek help.

I immediately followed the rare leads I could find and booked a visit with a Lyme literate doctor in Sydney. The wait was 3 months. I could not fathom a 3 month wait, given that my symptoms rapidly accelerating. I did go for another heart check, from which I walked away with a script for anti-depressants and painkillers. I remember calling my mother, who I was supposed to meet with in Bali in a few weeks’ time. I wanted to arrange a phone appointment with her physician to see whether she could get an antibiotic script for me and bring the medication with her to Bali. But the wait was still too long. A week before Christmas I could no longer drive. I remember sitting in the car driving forward but not knowing where I was or where I was going.

My head was pounding and my short-term memory was affected, I could hardly walk a straight line, and my hands were shaking. I got on the bus and somehow got myself to one of the GPs at my regular practice, who unsurprisingly told me Lyme did not exist in Australia. I responded that my mother’s physician had died of Lyme complications, and I was not going to leave his room without a script for antibiotics. He left the room for a moment and returned saying that there was currently uncertainty whether Lyme existed. He prescribed a standard course of amoxicillin “just in case”. Lyme patients will know that amoxicillin has poor effectiveness against the spirochetes. But I did walk away grateful.

I took the medication and that was when the full extent of the infection became obvious. About 2 hours after the first dose, I could feel pain in my joints, muscles, nerves and every fibre of my body. I realised that the bacteria were already throughout my system, 6 weeks after the bite. And I quickly understood that what I was experiencing were my first herxes. I remember cooking Christmas dinner for guests and not being able to remember what spices I had added. A board game I had played a thousand times before was impossible, as I could not add points together. I also struggled with speaking clearly and conveying my foggy thoughts in words.

Finding the right kind of help

LDAA - Dee, sick in Bali

Christmas passed and I went to Sydney for New Year, ready to fly to Bali on 2 January to see my mom. She did indeed arrange a two-week course of doxycycline. But as the amoxicillin had started causing weird bruises all over my body, I popped over to a surgery in Newtown.

I had somehow miraculously got an appointment with a doctor of the same name as the Lyme doctor I was on a waiting list for. I asked him straight away whether he was the same person.

Image: Dee, sick in Bali, January 2015

On confirmation, I started telling him straight away what had really happened. I walked away with a four-week script for doxycycline and another antibiotic I no longer remember the name of. He arranged another visit for me in a month. I remember feeling like I had won a lottery – finally, there was someone who understood and was not in denial. I was so happy.

The antibiotics helped instantly and after the herxes that followed the medication, the symptoms would ease a lot. I was able to think again. I was still in pain and wondering how long this was going to take, but I felt better and more at ease in knowing that I was getting the right kind of help.

But to my surprise the illness did not end quickly. Every time I would stop taking antibiotics the symptoms would come back with a vengeance. The 3-month wait for my original appointment came around quickly, and in the doctor’s private clinic we intensified the regimen by adding intravenous antibiotics and vitamins. I would travel from Canberra to Sydney twice or even thrice a week for the appointments. The cost was starting to add up. I occasionally got help from a nurse friend, who would administer some of the drips at home after I had bought relevant supplies and prescribed antibiotics.

But financially it was still significant, as the prices of long-term antibiotics were astronomical. And despite all that effort, the progress would be great on antibiotics, but gone immediately when I went off them. And so passed year one of my health journey. As an academic on full salary, I was still finding the costs of treatment to be very high. The private insurance covered nearly nothing, and the antibiotics, together with probiotics and supplements were a major drain on the budget. And on top of that there were trips to Sydney, private specialist visits and other costs. I eventually had to extend my home loan by $30,000.

Positive tests, and more positive tests

A year into the health struggle, we finally managed to get some tests done. The Australian tests for Rickettsia came back positive for all Rickettsia strains we tested for. I was in shock, but at least I knew I was not imagining it. It was not stress and it was not an imaginary illness. When I finally managed to visit my mother in Poland, I went to a Lyme testing lab and got tests for all tick-borne bacteria they were testing for. The tests results showed positives for Lyme, two types of Bartonella, Chlamydia pneumonia, Ehrlichia and everything else we tested for, except Babesia. I took the results with me to my doctor in Sydney. At the same time, he finally got access to Armin Labs, so we retested to be sure.

Somewhat unsurprisingly, the results were the same – positive for everything except Babesia. I remember crying a lot at the time, as I had no idea how to get rid of a bunch of vicious bugs eating away at my health. But I kept fighting despite the overwhelming burden of Lyme. As time passed and the struggle continued, work was beginning to feel difficult. I was finalising my first monograph manuscript (a special type of book written on a single specialised topic).

Image: Home IVs were supervised by Dee’s cat

I remember I had to write before taking antibiotics, then sleep for 2 hours after due to herx headaches, and then resume the work before the evening dose of antibiotics and another herx. Despite intensive antibiotic regimen I could not get back to normal. I could not exercise like I used to; I could not enjoy my life like I used to. Life was all about managing work and managing health.

The book eventually came out, but not in the shape I wanted it to, and another year of the health struggle had passed. Symptoms continued and I tried every combination of antibiotics there was. My gut was a mess, my body was in pain most of the time and my wallet was empty. In the meantime, I seriously injured my hand and needed a surgery. Because of the bacterial cocktail in my blood the wounds did not heal as they should. My hand healed badly, and I have a permanently disfigured finger; it was an open wound for about 3 months before it healed as a giant scar.

My workplace did not understand any of my health/work issues. I still had the same duties as before, regardless of the strain the illness took on my body. I did my best, but all my energy went into managing work and looking after my health. After 2 years of antibiotics my Sydney doctor advised there was nothing more he could do. The bacteria should not have been there anymore, and he told me we had to stop the antibiotics. We did, and unsurprisingly the symptoms all came back within days. I started to feel desperate as the symptoms made normal existence impossible.

Undergoing treatments, 2015 – 2020

The Lyme clinic in Poland

In the meantime, having talked to her friend whose sister had Lyme in Poland, my mom heard of a Lyme-focussed clinic – St Luke’s clinic in Gdansk, that was only 2 hours from where she lived. I had the benefit of speaking Polish, which as it turned out would not have been needed. The clinic functioned in Polish, English and Norwegian, as it needed to service many regular Norwegian patients who apparently struggled as much as Australians to get proper help. While on a research exchange back at my university in Finland, I popped over for a visit and arranged to see Dr Krzysztof (Chris) Majdylo.

I expected to hear the same story as I did in Sydney, but I was so pleasantly surprised. Dr Majdylo turned out to be incredibly knowledgeable, not just about Lyme disease but about the immune system more generally and about causes and treatments of other inflammatory conditions. We tested for all other conditions that could cause lingering symptoms, including gut imbalance, other chronic conditions and possibly other infections. But it all came back to Lyme.

After 2 years of treatments, there was one piece of positive news – most of my bacteria were testing negative except Lyme, Bartonella and Ehrlichia.

We tested for all possible strains of Lyme, as it turned out I had more than one strain. We continued with antibiotics but added hyperthermia treatments, which were available in Gdansk. I spent July, my main holiday month having treatments. We used medium heat hyperthermia, not the extreme hyperthermia that many have tried in Germany. I was happy to do medium heat a few times, rather than risk any serious side effects of an induced 40-degree fever. Thirty-eight degrees, the temperature we used, sounded like a lot to me already.

What shocked me was the pain of the first 5 treatments. My infected nervous system was literally causing me to writhe in pain. I had to take serious painkillers so that I could withstand it. After 5 treatments my nervous system symptoms eased a lot. The pins and needles were becoming rarer. But the headaches and the heart ache would return as soon as antibiotics were withdrawn. This was year 3 of my journey and I was exhausted. I had also spent all my savings and had to extend my home loan by another $30,000 to cover the costs.

In year 4 I started to travel to see mom as well as pop over to the clinic in Gdansk twice a year. I would come back with a load of antibiotics and other medications to last for a minimum of 6 months. We tried low dose naltrexone, herbs, vitamins and yet another combination of antibiotics. Despite all that, Lyme was not going anywhere. Eventually we started pulsating the antibiotics and little by little extending the breaks between doses. In year 5 I finally managed to live with 3-month intervals between antibiotics and used them only during 5-6 flare-ups a year. When the flare-ups came, they were still bad, involving mostly heart and headaches.

Every summer and every winter holiday I would pop over for more hyperthermia and a visit with Dr Chris. At this point I was happy that I was not on daily antibiotics, but I was giving up on the idea that Lyme was ever going to go away. Thankfully, Dr Majdylo would not give up. In year 6 the symptoms lingered, but I could finally manage them with short antibiotic courses and herbal supplements in-between.

Eventually, after seeing the lab tests, letters from my overseas specialist, and knowing that I have been improving with treatment, my regular GP accepted my Lyme diagnosis. So, I have also been able to get prescriptions for short courses of azithromycin.

Over the course of 5 years, I observed Australian doctors slowly becoming more accepting that the Lyme problem exists here. Still, even if they acknowledged the existence, they did not know the appropriate treatment protocols due to the lack of knowledge stemming from the years of denial of the problem. And naturally, when the flare-ups occurred they could still result in overwhelming headaches, systemic joint pains or heart problems.

Supportive Oligonucleotide Technique (SOT)

The chronic and exhausting condition was beginning to affect my work. The university management’s understanding that I needed extra consideration due to chronic illness was progressively declining. In year 6 of my Lyme journey, I decided to take a job back in Finland, at the University of Helsinki. I was there only for a few months before Covid hit. While in Helsinki I travelled to Gdansk again after a bad flare-up no doubt caused by the stress of moving. It was then that Dr Majdylo told me about Supportive Oligonucleotide Technique (SOT) treatment.

At that point I no longer believed I could get rid of Lyme. Life was a series of good times and flare-ups, and I was ready to accept this reality for good. I had spent probably a $100,000 on treating Lyme and I was doubtful that another $5000 for SOT was going to make a difference. But as Lymies know, there is nothing to lose if you have a chance to get your health back. So, I decided to do it. They took the blood and sent it for tests again.

Lyme and Bartonella came back positive after 6 years of extensive treatments!!!

Six years and the bug would not budge. So, at first, we ordered SOT for Lyme. They took my blood and sent it to the lab in Germany, where they generated my individualised SOT treatment.

WHAT IS SOT?
SOT therapy matches oligonucleotides to the specific sequence of individual genes of Lyme bacteria species specific to you. It disassembles the replication gene and acts as an elimination mechanism that continuously targets your bacterial infection.

I was promised that the effects of SOT would last 6 months. On the day of my treatment, we also took blood for Bartonella SOT, which I paid for and was due to receive in April 2020. I got my Lyme SOT treatment on 30 January 2020. Five days later I was flying to Australia for 2 months to spend some time with my new partner and friends and visit my former workplace to work on my second monograph.

Along came COVID

Needless to say, Covid had other plans. The border shut. I had difficulties flying back to Finland. I arranged to work remotely here in Australia, and waited. In the meantime, my Lyme was becoming quieter. I felt almost no symptoms at all. I was no longer taking any medication. After 6 months, the alleged end of the SOT’s effectiveness, I could feel flare ups again, but far milder and easier to control. I got an azithromycin script but did not have to use it. The flare-ups consisted mainly of pains along my long bone structures – typical symptoms of Bartonella. I had a zoom chat with Dr Chris again who told me of the new herb – cryptolepsis, which apparently masterfully targets Bartonella. I ordered it while waiting for the borders to open.

Cryptolepsis, just as SOT before it, worked wonders and handled any flare-ups in no time. I started realising that my energy levels had been better, and I had been able to exercise regularly again. Working suddenly caused no difficulties, despite late teaching hours due to the time difference. Sadly, due to the Covid border closures, my pricey Bartonella SOT expired waiting for me to be able to fly to St Luke’s clinic. While that was a financial loss, I have gained so much during this time. I have now felt like the old me again for about a year.

I have had the energy and the ability to think clearly again. I have also finally been able to exercise and lose some of the weight I put on during the inactive years. I am rarely in pain and when I am, herbs handle it quickly. I never have chest pains anymore. I have bone pains and smaller headaches. But there are no more joint pains, no more nervous system symptoms, no pressure in the chest. While I am waiting for another trip to Gdansk in September, I am confident that the Lyme test will be negative. I am not so sure about Bartonella. If the Bartonella test comes back positive I will spend $5000 on what I hope is my last treatment, another SOT.  My Lyme SOT turned out to be worth of all the money in the world, including the hassle of having a managing doctor overseas.

The bottom line is that with the right kind of help even the most hopeless cases can improve. I got my SOT at the point when I had accepted that my life was going to be a series of good times and regular bad flare-ups. I had spent over $100,000 in treatments and trips to an overseas specialist. In the process I gave up my steady job to work in a more well-being friendly environment.

This year, 2022 is year 9 of my Lyme journey. Thankfully, I am finally at the end of it, I hope. I have been able to work remotely, and I am about to make a full Professor this year. My second monograph is in print, and I hope it is better than the first. I need to figure out what to do with the job in the long run, as I love my life in Canberra and the struggle of moving for the second time feels overwhelming. But still, that seems like a small effort compared to my decade-long health struggle.

Hope for the future

I wish Australians were offered appropriate treatments for tick-borne illnesses in Australia, without the need to seek help overseas or to break the bank. And when I think of my story, I realise I was lucky so many times along this journey, from knowing that ticks were dangerous, through a serendipitous visit to a doctor in Newtown, to finding an amazing specialist overseas – thanks to my mom and speaking a few other languages than English.

During my early trips to Sydney for regular antibiotic drips I met so many people who struggled to get any help at all, and whose symptoms have deteriorated rapidly. I have saved a few people the same pain, by sharing my story regularly with my friends. My German friend got antibiotics immediately after a tick bite, so did another one in Finland. They are fine and developed no illness. I hope that we can eventually build enough awareness to have diagnostics and early treatments available without the need of finding the ‘right’ doctor, and without anyone telling us the illness that causes so much pain does not exist. This attitude not only causes pain, but seriously undermines trust in medical authorities and their approach to public health. Not to mention causing so much distress to my fellow Lymies.


Year infected: 2014
Vector, if known:
tick
Location:
South Coast, NSW
Year diagnosed:
2015
Diagnosis:
Borellia burgdorferi, Borellia miyamotoi, Bartonella quintana, Bartonella henselae, Ehrlichia, Chlamydia Pnemoniae, Mycoplasma, Rickettsia australis, Rickettsia honel, Rickettsia conori, Rickettsia africae, Rickettsia ricketsii, Rickettsia felis,
Number of doctors prior to diagnosis:
2
Misdiagnoses (if any):
1
Current state of health:
good


Dee Gozdecka
Canberra, 22.02.2022
Find out more about Dee.


 
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