Don’t Say ‘Lyme’


By Jane Lockton

The Bite

In 1993, my husband and I moved to the UK to start an 18-month stay for work and study and of course, as much travel as possible. At the beginning of our stay, we took a trip with friends to Scotland where we spent a week or two sailing around the Islands and exploring the Highlands. Somewhere along this trip a tick found me, tucked itself in between my 7th and 8th rib, and settled in for a feed. As we were travelling and because of its position, I didn’t realise it was there, and I knew nothing at all about ticks and didn’t know to look for them. I was more worried about the hoards of midges!

In a scenario familiar to many in the Lyme world, I developed a bad ‘cold’ not long after. I figured that we had just moved to the other side of the world and it was highly likely I’d come across some cold or flu virus I wasn’t immune to. No biggie. Then a little while later I noticed this weird red rash, which I now know to be Erythema migrans. It didn’t hurt or itch, and though both my husband and I were health professionals, neither of us had any knowledge of Lyme, and we went with the ‘watch and wait’ treatment option. We decided it would either get better or worse and we would deal with it accordingly. Of course, several weeks later it finally went away. All was well. How little I knew…

The symptoms started

About 4 years later, I became pregnant with my first child. I felt pretty awful through the whole pregnancy, and about halfway through suddenly developed severe insomnia. I was lucky if I got one hour of sleep a night. Everyone put that down to be uncomfortable in pregnancy, and while I didn’t think I felt all that uncomfortable, I didn’t have a lot of other options but to accept that advice and cope as best I could. When my daughter was born she struggled for the first couple of hours with breathing difficulties, and then after that with feeding. After a few weeks of minimal intake, failure to thrive and constant crying she was admitted to hospital, diagnosed with severe gastro-oesophageal reflux, and was commenced on naso-gastric feeds.

I was a paediatric nurse, thank goodness, and was at least familiar with what was going on. What was meant to be a short term feeding option while she was treated with appropriate medications and outgrew her reflux turned into 7 years of naso-gastric and then gastrostomy feeding, several major surgeries to correct gut anomalies and countless more minor interventions.  While all this was going on my insomnia did not get better, it was followed by depression, and I still didn’t feel all that well.

…And kept getting worse

4 years after my daughter was born, after much soul searching, we decided to have another child, and were blessed with twins. I felt great during this pregnancy but once my boys were born (both with severe reflux but managed aggressively from a few weeks old) I ended up with lumbar and thoracic back pain that just wouldn’t settle despite frequent physiotherapy, exercise programs, taping etc. The pain was just unrelenting, and managing three small people was challenging. I mention this because while this pain was seen to be a consequence of carrying twins, more than 15 years later I learned it was not.  

When my kids were 4 and 8, I went through a stressful separation and subsequent divorce. About 12 months after this, fatigue hit. I have always been a “just push though” kind of person, but I can remember very clearly going to the gym, sitting on the leg press and saying to myself “I just cant do this today”. I put it down to stress, but ‘today’ lasted a long time. A little over a year later, the children and I moved away from the town we were living in and resettled back in Adelaide.

Not long after this I visited my new GP, saying I was very tired and struggling to get myself out of bed every day. He checked me over and took my temperature, which was 38. Ok, I was sick. Give me a hint he said, any other symptoms? Nothing I said, just tired. We did a few blood tests and a chest x-ray, nothing showed up. But within a month, I was in hospital with pericarditis of unknown cause. After a week or so in hospital (but with no treatment), the pain began to settle, so I was sent home. Of course, it was attributed to stress.

In the following years symptoms steadily increased. In a scenario familiar to most Lymies, symptoms gradually developed and I felt like I was turning up to the doctor every few weeks’ with some new symptom that was unexplainable. Apart from a very low vitamin D level, every blood test that was done was normal. Various specialists suggested Lyme disease as a possibility, and in total I had 5 negative Lyme tests in Australia in the period 15 – 25 years after I was bitten.

Most specialists were dismissive and told me to get more rest, increase my antidepressants, exercise, eat well and move on.

One even rolled her eyes at me when she asked me to describe where my pain was and I said “well its everywhere?” You know, you’ve all been there.

Of course there were the misdiagnoses of fibromyalgia and unexplained ME/CFS, which most of us have had. At this time I still didn’t know that the EM rash was diagnostic, so while it looked like Lyme I didn’t have the knowledge to push the point. Frankly, knowing what I know now, I’m not sure I would have been ‘heard’ by specialists even if I had. By 2018, I had pretty much everything on the checklists of Lyme symptoms, from the fatigue to cardiac, neurological, hormonal, joint, gut, respiratory, ureto-genitory, cognitive and musculoskeletal issues. I won’t go into detail as the list is loooong. And the pain was endless. My poor GP was at a loss as to what to do, so I saw integrated health practitioners in the hope of more information or answers. However in the end I was no further forward. I also began to hear about the issues for doctors in diagnosing and treating Lyme Disease in Australia.

Throughout these years I had to reduce my hours at work as I couldn’t manage with the pain and fatigue anymore. As a single mum the pressures were intense at times, but somehow we kept plodding on. I decided that if I couldn’t work as much, then I would do a bit of study in the field that I had always wanted to work in – psychology. I must have been mad, but I just kept going year by year, sometimes doing only one subject, sometimes two, but always one step at a time. I think it helped me feel like I had some hope for the future. I also continued to see a psychologist (I had been seeing someone on and off since I was first diagnosed with depression when my daughter was a baby).

Fortunately my current psychologist is a health psychologist and had a good understanding of how to help me manage my life with the fatigue and pain. She also asked me to participate in a research study she was involved with. One of the steps in the process was dark field blood analysis. For the purpose of this study it was to determine any nutritional deficits, heavy metal toxicity and so on. But it showed two very important things that would prove to be crucial in the end. Though the analyst didn’t know what it was (not her field of expertise), there in full view were “parasites” of some kind moving around.

Rouleaux formation

My blood also showed rouleaux formation (see image at left). In the therapists field of study this was due to too much electromagnetic contact, in mine, this is due to only one of two things – certain forms of blood cancer, which I didn’t have, or a chronic infection.

By this time I felt like my life I wanted had been taken away from me. I couldn’t do the things I wanted to with my children. We were barely scraping by financially, I couldn’t do my favourite hobbies – hiking and singing – any more as my nerves were so affected that my muscles weren’t working. I couldn’t hold anything heavier than a glass of water, I was dragging my feet because I couldn’t feel where they were, the headaches were awful, the back pain, the brain fog, memory issues and word finding problems were impacting every day, I was constantly short of breath, my heart arrythmia was getting worse, and I was beginning to have trouble swallowing. I struggled with writing and typing because my right, dominant side was more affected. Every day was just pushing through with increasingly compromised function. It was getting scary.

Treatment begins – by sheer luck

Red spots on Jane's face

In 2018, I developed some weird skin spots. They were like little ulcers, and once they started they wouldn’t heal. Initially they were only on my face, and my GP and I assumed it was hormones, but after a few months they then appeared on my arms, down my spine and a few on my legs.

At this point we biopsied them and found – you guessed it – nothing. I was referred to a dermatologist who biopsied a few more at various stages of development and – you guessed it again – nothing. We tried various creams, lotions and potions which were ineffective. At the start of 2019, by which time I had dozens of lesions, we trialled some azithromycin for a few days to see if that made any difference. Lo and behold, not only did the spots stop getting worse, (they took months to heal so healing wasn’t a good indicator) several other symptoms also improved. We stopped the antibiotics, and it all got worse again.

My GP, who was pretty sure we were dealing with Lyme but had no blood test evidence to go on, sought support from infectious diseases specialist. So I went off for a consult with another ID specialist who I hadn’t seen before. Kind, but not helpful. He tested for a few things, including Lyme. I will always remember him saying we could test for Lyme but it was likely to be negative, and if it was positive it was probably a false positive… Ok, so why are we testing for it then if you won’t believe a positive result anyway…? Of course all the bloods came back normal.

My GP then sent me back to a general physician who I had seen a few years earlier, just to rule out anything else. This was the guy who had suggested I get more rest (somehow he thought I could offload my children to someone????) and increase my antidepressants. Once more a pile of blood tests and scans, all normal apart from that vitamin D level. He said I didn’t need antibiotics, that the effect of them was probably due to their anti-inflammatory properties, and once again he wanted me to just increase my antidepressants. At the last minute I asked to show him the photos from my dark field analysis – and this stopped him in his tracks. I’m so glad I had that test done.

The rouleaux formation was so clear that he couldn’t ethically ignore it. As we had ruled out the possibility of blood cancers, he had to accept that I had a chronic infection. He then brought up pictures of EM rashes and asked if I had ever had one – yes.

I think he was actually shocked and had to agree that antibiotics were necessary and if azithromycin was working, to stick with that. My GP was then happy to keep me on it for the time being.

So 25 years after my bite, treatment at last.

We kept the azithromycin going for 6 months and then tried stopping to see what would happen. You guessed it – the symptoms all came back. My GP was not Lyme literate, but was amazingly supportive, so we then tried to find someone else in Australia who might provide some guidance for treatment. There was no one who would help him. So, from there we looked at protocols that were available on line without a consult from doctors in the USA (Covid had shut the world down by now) and eventually trialled the protocol suggested by Dr Marty Ross.

The protocol included azithromycin, doxycycline and fluconazole. It helped a lot and so I stayed on that protocol for 12 months, along with the various supplements and detoxing strategies that Dr Ross recommends and comprehensive probiotics. While I was aware of the international guidelines for treatment of late stage Lyme, without a positive blood test from an Australian lab, we couldn’t access that treatment. I also made sure I practiced relaxation strategies, mindfulness, red light therapy for my back, low intensity exercise, good sleep hygiene, kept my diet stable and tried to resist the urge for sugar as much as possible! I had lymphatic drainage massages whenever I could afford it and I also continued to see my psychologist regularly.

By late 2020, hoping that things would have improved, I stopped the antibiotics, and within 6 weeks all symptoms were back in full force.

I went back on the treatment and we continued with occasional breaks to see if the Lyme had resolved. Within a couple of weeks of stopping medication, the symptoms would recur. The antibiotics were holding it, but not getting rid of it. We hit the wall in late 2022 when symptoms started to worsen despite the treatment protocol. We tried tweaking some things, but in the end, the protocol I was on provided the best symptom relief. By this time I was approaching the end of the study I had started way back in 2009, so I stayed on treatment until I submitted my thesis in July.

This was a such a slog, between co-ordination issues with my right (dominant hand), brain fog, word finding difficulties, the blistering headaches and fatigue, getting that written was a marathon. I’m never studying again! In the hope that with the reduced stress my symptoms might settle, we waited a month and then trialled stopping the antibiotics. You can probably guess that they didn’t settle and I was back on them again with a month. So at this point I renewed my search for an overseas clinic that might be able to help. While there are a number of different clinics, I was keen to find somewhere that would give the IV antibiotics I should have had, along with any other evidence based treatments that might be offered.

The road to Germany

In August 2023 I reached out to the Clinicum St Georg in Bad Aibling, Bavaria. I had been trawling through the information on their website, reviews, research they had published, communicated with past patients and finally decided to ask if they could treat me. They were very responsive, and very kind. They asked for my full, by now, 30 year history of symptoms and I completed various questionnaires and forms. They also asked me for Lyme blood test results, and not being at all surprised at the negative test results from Australia labs asked if I was prepared to get some done by Armin Labs. Yes I was, and finally, there was the positive test.

The process at St Georg is that the team then have a case discussion and decide on treatment options. They replied to me saying that they were not sure they could help me as my case was very complicated and because of my 4 Covid vaccines. What?? That was not a good day, I cried. I had placed a lot of hope on their help, and it took me a few hours to recover from reading that email. They did offer a telehealth consult though and I took this option as I wanted to know 1) what were my options now, and 2) why did the Covid vaccines prevent my treatment?

I had the telehealth consult the following week, and they had been very thorough I must say. We spent an hour going through my case and they agreed that it was Lyme disease, but they were worried about the impact the covid vaccines had on my body and therefore whether I would get the full benefit of the treatment. Looking carefully at my history, they noticed that I had become sicker after my first covid vaccine. I will come back to this further down the track, but for now, this is why they were concerned that there were other issues going on. In the end, after we fully discussed the whole situation, they were prepared to treat my Lyme and I was booked in for the 2nd of January. They allow a companion to stay with you and so my son, who is fluent in German came too.

Clinicum St Georg

We arrived on a quiet afternoon to the beautiful little town of Bad Aibling. We were admitted and basically spent the day settling in. The rooms are comfortable and just big enough for two. While it is a hospital, the rooms have a homely feel about them which is a good thing given we were there for 4 weeks! We had a small balcony to sit on, with a view to the Alps, and it was comfortable without being too ‘sterile’. The afternoon was spent filling in forms, meeting various members of the team and generally getting to know our way around. Most people spoke some English, and many spoke good English. Between my son’s German and everyone else’s English communication was easy. Meals are taken in the dining room (unless you are too unwell on any given day to get there) and so we wandered down for dinner (the meals were nutritious and pretty good for a hospital!) before settling ourselves in for the night and deciding whether it was too early to go to bed at 7.30! Of course, being Winter, it was dark at 5pm which helped.

So it begins

The next day all the fun started. Blood tests, IV lines, ECG’s, respiratory function tests, dark field analysis, nutrition profiles, and the beginning of the IV antibiotics, oral supplements, IV supplements and the detoxing therapies. I also had an extra tests to do with covid called a Microclot. More on that later. Apparently my veins are not awesome and we could only get a line in my cubital fossa (elbow), not ideal but the best at the time.

Foot detox bath

Prior to treatment therapies included foot baths, magnetic field and blue light therapies. For late stage Lyme the protocol is generally IV ceftriaxone and IV metronidazole, with two rounds of whole body hyperthermia and a round of apheresis, along with the detox and support therapies. Antibiotics started and the following day things got real.
Left: Detox, detox, detox!

Breakfast was allowed and from then on clear fluids only. The detox therapies continue but this time with the added joy of a full colon cleanse to ensure that the gut is completely empty prior to the hyperthermia treatment. That evening an injection was given to boost the body’s production of cortisol. Honestly, this was the most painful part of the entire process! One tiny injection! Then off to bed for the big day the next day. Already, after 24 hours of treatment, my spots had started to heal. At 8 am the next day, the hyperthermia process began. Once settled the propofol and midazolam infusion starts and within a few minutes the next thing I knew was that it was the middle of the night, it was all finished, and now all I had to do was sleep and recover.

The hyperthermia takes around 6 hours. 2 hours to increase the body temperature in a whole body ‘tent’, followed by 2 hours at core temp of 41.6 – 41.8, and then it takes about 2 hours to cool down. I was also given a dose of daptomycin during the hyperthermia each time. Every body system is carefully monitored throughout. I don’t remember being taken back to a room for overnight monitoring at all, so apparently the midazolam was working well!

Once back in the room (not your original room, one close to the nurses station) there was regular monitoring, IV medications and supplements, such as high dose Vitamin C and B.  A urinary catheter is inserted during the treatment and then removed the next morning if all is well. Breakfast comes ( so nice – 48 hours since food!) and while I didn’t feel overly hungry at that time over the day my stomach remembered what this food stuff was all about. Once you are feeling ok, you are taken back to your room, where your only job for the next couple of days is to rest. Honestly, I felt good. Tired, sleepy tired not fatigued tired, and so I just slept, read, watched Ted Lasso (I highly recommend) and recovered. I was still a bit lightheaded for the first 24 hours, but by the next day could move around as normal. I could already breathe better my body pain was settling and I felt good. And that back pain – completely gone!

Central venous catheter

They had tried to get another IV line in during treatment which proved problematic. I now had one in my hand but it wasn’t working well and was quite painful. In the end we took it out and put another one in my elbow. The doctors spoke to me about having a central venous catheter (CVC) in to avoid issues in upcoming treatments.
Left: The CVC is in. Not the most comfortable thing to sleep with, but it worked brilliantly.

Being a nurse up until quite recently, I was aware of the risks, and bless them they didn’t pressure me. However once the line in my hand had stopped working I knew the writing was on the wall. I must say I was quite anxious about this but they were great, offered me some light sedation to relax me and we got it all done without too much fuss. While not the most comfortable thing, it did make everything from there on much easier.

The following week the whole process continues and the prep starts for the second hyperthermia, one week after the first. All was the same as the first time but I did remember moving back to the room for overnight observation, so the midazolam must have worn off faster! I had a massive headache that started the night before this treatment and so going to sleep was blissful. Unfortunately I woke up with it and if anything it was worse, so I had a less settled night with lots of non narcotic pain medication given as needed. Interestingly, at breakfast the next day I had a big dose of anti-inflammatories, and the headache went. And that’s the last headache I have had. After 15 years of crippling headaches, I have not had more than a fleeting niggle for over 8 weeks now. That alone is worth it.

For the following week, it was the same protocol of medications, detoxing and resting. I had a physical therapist who was amazing and lectured me regularly on doing nothing but rest and very gentle walking while I was there, and the good thing was that I could do that while I was there. No other pressures and tasks that had to be done, I could truly rest. One other great treatment was local anaesthetic injections into specific muscle points on my neck face and head. I wasn’t expecting these when I was told beforehand that it was acupuncture, but wow, it was amazing. Instant pain relief. I had a couple of lots of this while I was there. If there is a particular therapy that is helpful for you then you can request more of it (at a slight additional cost).

Apheresis

The following Friday I had apheresis. Essentially this is like dialysis, but filtering out Lyme detritus, heavy metals and whatever else your body needs to get rid of. The central line was used, and it was all very relaxing. It takes around 3 hours and make sure you empty your bladder right before you start! Interestingly I got very itchy in all my joints that had been painful and across my abdomen and the bottom of my lungs.
Left: First apheresis

It wasn’t uncomfortable, just noteworthy, and passed within the duration of the treatment. Then it was back to rest and recovery.

The detox therapies now included ionisation therapy, and also Mitochondrial System Therapy. This second one was combined with additional high dose vitamin infusions, as well as chelating infusions. I had four rounds of this and loved it. It also really helped, I noticed my energy levels markedly increased. By now we are at the end of the third week, with one week to go of mainly recovery and detoxing. I had been expecting a lot of herxheimer reactions, which I had certainly had on oral antibiotics, but the detoxing was obviously working because I felt pretty good the whole way through.

Discharge happened on the 30th of January. We left with mixed feelings. I had felt safe and cared for in hospital and now I was nervous about venturing back into the world and seeing whether this treatment had actually worked. But first, Covid….

Covid-19

As I mentioned earlier on, I had a microclot blood test to see if the Covid vaccine had in fact caused a problem. I elected to have this test done and was an additional cost, but I wanted to know. I had the AstraZeneca vaccine for jabs 1 and 2, and the Pfizer vaccine for 3 and 4. The first one made me quite unwell for a month, and in the end blood tests and scans were done to rule out clotting problems. I have had Covid itself once, basically had a few cold symptoms for a few days and then some added fatigue for about a month and that was it. However, the microclot test showed that it had caused a whole lot of tiny blood clots in my blood and a raised platelet count.

Apparently the vaccines and Covid itself cause inflammation of the epithelium of the blood vessels, causing the body to try and heal this via its usual clotting mechanisms. The consequence of this can be all these tiny microclots that are not detectable on the usual scans we use in Australia for clots in veins. I was shown images of my blood with many of these little clots. As a consequence we did a second apheresis session (this was an additional cost) to filter out the microclots. Once again this was all very easy, but this time I felt very tired afterwards, which is apparently typically common after this type of filtering. Then the night before we left, I had another microclot test done, and this time the results showed that we had filtered out heaps of the microclots, but my platelets were still problematic.

Had I not already had my central venous catheter removed, they would have offered another apheresis but my line was out, and I was also booked on a flight home two days later. Instead, we opted to commence blood thinning medication, so I came home with the appropriate medications for that and commenced them before my flight. I was also discharged with various supplements to boost mitochondrial function, immune function and general wellbeing. All of the standard supplements were part of the package, only the blood thinners were an extra cost. We ended up buying another suitcase to get it all home!

Congenital Lyme

We also had another curve ball while we there. My son had various issues since he was very small. Pain in his legs, issues with tendons, easily fatigued, and as a young adult diagnosed with Autism Spectrum Disorder. More recently he had developed widespread aches and pains and the suggestion was that he had fibromyalgia. When we arrived I asked the doctor if congenital Lyme was really a thing or more a theoretical possibility. Definitely real she said and asked my son what his symptoms were, and recommended that we test him. Sure enough, he has Lyme.

Discharge day

We were able to take advantage of him being with me, and he had a single round of treatment too, with antibiotics and one round of hyperthermia. Apparently they find with congenital Lyme one round of treatment is often enough, however he is able to go back in the future if needed. Most of his pains have now gone, including ones he has had since infancy, his fatigue is less severe and we are monitoring his progress.
Left: Discharge day – tired but happy.

His older sister, as previously mentioned, was born with various issues, and after a trip to Mongolia in 2018 for an archaeological expedition was unwell for several months with vague fatigue and joint symptoms. I didn’t think Lyme, but she had to have some bloods taken for a screen in 2019, and she tested positive for syphilis. At the time it was extremely unlikely that she had syphilis and the doctor she saw said that it was probably a false positive and that they would check again in a few weeks’. If the level of antibodies hadn’t changed then it was a false positive. Which it was. I did some googling, and guess what – yes – false positive syphilis tests can happen with people who have Lyme disease.

So I looked at her symptoms with fresh eyes, and we sent blood to Armin labs for Lyme and co-infections. She was positive for Lyme, and only Lyme. We researched and found that there are two provinces in Mongolia where Lyme is endemic and she was in one of them. We assumed she had been bitten there and our beloved GP has given her azithromycin on and off since then to manage symptoms. Now I’m not so sure she got it in Mongolia. She is getting steadily more symptomatic and will need proper treatment.

My other son has had chronic fatigue symptoms for the last 8 years. We had him tested when we got home (through Australian Biologics, FYI). It turns out I’m an overachiever, I managed to share it with 3/3 children – 100%. I’m sure our GP will be pleased with this great news.

The new road

So we are now home and gradually adjusting to a new normal. I am feeling steadily better every week, and trying to learn where my new limits are. There have been forward and backward steps, but my brain and body are definitely clearer. I can think more easily, I am gradually having less brain glitches, less difficulty finding my words, less difficulty getting my head around new concepts. I also feel like my brain is rewiring itself, particular the right side where the cranial nerves were more affected. I’m guessing my brain was more affected on that side too.  I am back working 4 days a week and able to still function at the end of the day. I feel a bit weird in the sense of needing to get to know who this new person is. I feel as if I don’t quite know who I am, but I’m getting there.

There are still some side effects or symptoms of the treatment. I have bouts of the sweats during the day and occasional dizziness, but these are settling over time. I still have tinnitus which I am trying to get to calm down with an app I use. Hopefully it will get better. My sleep is a bit of a muddle and I am trialling some different strategies, but one step forward, I sleep really well with just melatonin for a few hours a night. Yay! I am still on extensive blood thinners for the post covid vaccine issues, and that will persist for several more months at least. I am still getting my head around all of my children being infected and how we manage that.

I feel like I am getting my life back, and I feel happy within myself. Having been unwell for so long, I don’t know what to expect. I don’t remember what its like to feel well, so its all a journey with no known end point. I was in my late 20’s when I was bitten, and am now nearly 60, stuff will have changed! There are days I feel like crying, that at last things are really getting better. There are days that I just want to go back to the clinic and feel cared for after so many years of having to find ways of coping. Strange, I know.. I am slowly finding myself and what this body and brain can do again.

There is so much that is better. The fatigue, the pain, the muscle and nerve function, my respiratory and cardiac function, my gut, my mood, all SO much better. I can do things and I feel like hope has returned. There are days that I feel excited at the possibilities ahead if all goes according to plan. There are days that I look back and cry at how hard it’s been. And there are many days when I look forward now with unadulterated joy.

My thanks

I am grateful to my children and my family or their understanding through all of this, to several dear friends who have always stood by and provided moral support, and to my psychologist and amazing doctor who I cannot thank enough. And I thank all of the Lyme community for sharing your wisdom with everyone impacted by those tiny elusive fiends running amok through their bodies.


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