My health went downhill after a tick bite

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I had never heard of lyme or borrelia or vector borne diseases before 2012, but I had to learn pretty fast once I became ill.

I was doing yard work and later had a shower where I noticed a tiny black tick on my upper leg, thought nothing of it, I'd had ticks before, so squeezed and yanked it out with tweezers. The following days I had a red round rash, which I'd never had from previous tick bites, then about a week later I had flu-like symptoms, swollen neck glands, dizziness, sweats, I passed it off as a cold and waited it out as I had always done when sick.

I got sicker over the next week; drenching night sweats, joint pain, spine pain, diarrhoea, heart murmur/struggled beating, spinning dizziness, nausea, numbness/tingling in fingers, severe insomnia, blurred vision, unprovoked outbursts of rage, severe unrelenting anxiety.

I hate going to the doctor (typical male), so looked up my symptoms to see if it was possibly something that would just pass. Lyme disease (borreliosis) popped up a couple of times, but I was more focussed on the flu. Nothing really matched my symptoms until I took a closer look at the lyme symptom profile and onset, and everything fit. Now being a science nerd, I knew not to jump to conclusions and gather more evidence and let it speak for itself.

Then I saw the cause; nymph (tiny, black) tick bite. Then I recalled the one I had pulled off, and I still had a red, flat rash with no scab at the site of removal. I saw the treatment was a few weeks of antibiotics. So I thought now was the time to see a doctor, present the evidence, and take the antibiotics, because I was getting worse.

I saw a GP, said everything above, and he lost his shit! He thought I was a hypochondriac, offered no other logical explanations for my symptoms, didn't ask if I'd recently travelled to an endemic region, and didn't think blood tests to rule out other possibilities were necessary. I left his office feeling awful from the symptoms, but now even worse after the way I was just berated.

I looked into it further and found that lyme wasn't recognised in Australia, and what I had just experienced was not uncommon. I was getting worse and worse, so booked another GP (these were the most doctors appointments I'd had in 5 years, I rarely got sick). The next GP was a bit more understanding and receptive of the evidence, but thought it might be Queensland tick typhus. I had come across this in my research and a few symptoms matched, but not perfectly like lyme did. He gave me a couple weeks worth of doxycycline which was good, as it covered both possibilities. After a few days of treatment I was back to normal again, it was amazing, and a clear indication that it was bacterial in origin, as antibiotics would have no effect on a virus.

The two weeks of doxycycline had ended and I was glad to see the end of that, I could drink beer again without getting nauseous from the tablets! But after a few days, all the symptoms returned. So I managed to track down a GP who knew about tick borne diseases (TBD's) and was fully aware that lyme or a lyme-like disease was in Australia. He was a five hour drive away, but I couldn't find anyone else.

It was so good to see someone who listened, took all the evidence on board, and thought logically and rationally without ego or preconceptions getting in the way. He ordered blood tests that eventually came back positive for lyme. He also made a clinical diagnosis of bartonellosis, which is a common co-infection from tick bites, and causes a lot of psychiatric symptoms.

I started three months of multiple antibiotics and made a full recovery. I thought it was all over (again), but after four months off antibiotics all symptoms gradually returned. So then I started 6 months of treatment, again fully recovering, and again thinking surely this was enough!?! I hated being on all the medications, it was such an effort to take all the pills each day, but still it was much, much better than the absolutely unbearable symptoms of lyme and bartonella. But yet again all my symptoms returned, this time after only four days of stopping antibiotics.

Now I knew I had to take this seriously, so I did a lot of perusing of the scientific and medical literature and found many studies highlighting borrelia's mechanisms for evading antibiotics, such as cystic forms and biofilms. With this new information onboard, I was able to find more information on other drugs that are able to break through these defences. But before I got to that, I knew I had to stop eating crappy food like McDonalds, KFC, and Dominos regularly, to get my body as healthy as possible to give it the best chance of building up a strong immune system and assist the antibiotics to kill this disease off once and for all.

So I immediately cut out all sugars, carbs, and most meat. This was a big mistake. After four days I started vomiting, had diarrhoea, insomnia, and migraines. I couldn't stop throwing everything up. I went to a local doc and got anti-nausea tablets, but they didn't help, then anti-vomiting strips they give to chemo patients, still didn't help, I just kept on vomiting day after day. I lost nearly 10kgs in a week. Then the mental stuff started.

There is no way to describe it. It was absolute, sheer terror. I'd had panic attacks in the past due to anxiety and stuff I was dealing with at the time, but had become very familiar with it and with the help of a psychologist had learned how to manage it very well. As much as it sucked, it was never so bad that I became suicidal. But this was a whole other level. The way I described it to my friends was if you were locked in a room with this feeling, you would smack your head on the wall to knock yourself out just to make it stop. It was getting worse, day after day, and antidepressants and diazepam didn't even come close to having an effect on it. It was an incredibly horrible, inescapable, claustrophobic feeling of terror.

I called the lyme doctor and said I was getting suicidal, which I was, and he said it was a bacterial die-off reaction, aka Jarisch Herxheimer reaction (which I later found out is a huge problem for lyme sufferers, just Google or Wikipedia it), and to stop all my medications and to get to the hospital. I was terrified to go off my medications incase the symptoms got worse, and was terrified to go to the hospital incase they treated me the same way that first GP did, and I knew they didn't recognise lyme, and would have just thought I was psychotic and locked me in a room where I couldn't make this stop, i.e. by killing myself.

I thought I had tried all available treatment options, especially for bartonella which has many mental symptoms like anxiety/depression/suicidal thoughts, and now they were failing and this severe terror that was intensifying by the hour was here to stay. I thought I was out of options, but most of all I had to make this severe, severe, claustrophobic feeling of terror stop.

So I took a handful of medications that I knew affected the heart when combined in large amounts, one of which was a bartonella drug. I felt like I was going to have a heart attack, which was preferable to how I was feeling at that point. But it was taking too long, I couldn't go on a second longer, it was getting worse and worse. So I went out the back door at about 10pm, and went down the street to a three storey house, where I was going to climb up and jump off their roof onto my head.

(Thinking back to all this, it just seems so insane that it almost feels like it didn't happen, I still can't fully comprehend it.)

I got to the house, jumped the fence, but the owner was there about to take his bins out. By this point all the pills I had taken were strongly affecting me, and it's a bit of a blur. I said I had to get my ball off his roof and tried to push past him. He stopped me, so I climbed up his tall fence again and as I fell I lost consciousness.

I can barely remember going to the hospital, I just remember still having the feeling of terror, doctors and nurses around me (trust me, this is something you never want to see from this perspective), and can only just remember one doctor almost yelling at me saying I didn't have Lyme disease (I must have muttered it at one point).

I woke up a day or two later feeling surprisingly good, the feeling of terror had gone, I barely noticed the pain. Then a doctor came in and told me I had broken seven ribs, fractured my pelvis in two places, fractured my tail bone, broken my collar bone, and punctured a lung. I looked down and had a hose sized pipe coming out of my chest.

My family arrived, they didn't know where I had gone, I think the hospital notified them, and told them what happened. It was very emotional. I hate knowing what I put them through, I still get upset thinking about it.

I stayed in the hospital for a few days, and got my family to bring my tablets, and I kept feeling good. I kept taking one of the tablets I had overdosed on which was a new bartonella drug I hadn't taken previously, but it seemed to really be helping. Everything came out of me through my bowels which was probably a combination of all the pills I had taken and massive bacterial die-off from taking a lot of bartonella drugs (refer to Jarisch-Herxheimer reaction again).

I left the hospital in a wheelchair, and my family helped me so very much throughout all of this. Making my meals, getting my medications, organising appointments, I honestly don't know what I would have done without them. Friends visited during this time and we all thought I had dodged a bullet, and was coming along nicely.

My fractures were healing well, but after a couple of weeks on the new bartonella drug in my cocktail of medications was causing side effects, and the lyme doctor said to go back onto the old one as this one (Avelox) may lead to tendon rupture with the side effects I was having.

After a few days on the old antibiotic, symptoms started to return, especially the mental and physical symptoms of bartonella. It appeared that this drug had lost effectiveness as I had been on and off it for over a year, giving the bacteria a chance to develop resistance. The symptoms were getting worse and worse again. I was exhausted and didn't know how I was going to cope with this again. Severe depression/panic/suicidal thoughts started coming back again, partly from symptoms and partly from not being able to handle the roller coaster ride anymore.

I was suicidal every waking moment of every day, for months. I spent a lot of time Googling quick and painless ways to kill yourself. It was a dark and miserable time. I now truly understand the meaning of the word "suffering". That's the only way to describe it.

Early one morning I got up as quietly as possible, pulled the case off my pillow, packed it with medications and other stuff, and took my brothers car. I was going to increase my dose of the old bartonella drug and see if that helped, if not; I was going to kill myself.

I went to Bunnings, bought a generator, a jerry can of fuel, and some ducting tube. I was going to gas myself in my car. I called my sister and brothers because I wanted to talk to them for what may have been the last time. It was very difficult and upsetting. They called the police who traced the call and found me. I took an extra bartonella antibiotic, like I was planning, just before the police got me and took me to the hospital.

At the hospital, everyone said there was no lyme or borrelia in Australia, and no one knew what bartonella was. They referred me to the psychiatrist without asking my history, or if I'd ever been to an endemic region, or any other questions about my health/symptoms. It was the exact reason why I didn't want to go to the hospital in the first place. I was still extremely suicidal but tried to remain as calm as possible so they wouldn't lock me in a psych ward and take away the antibiotics which were the only reason I hadn't killed myself earlier.

Over the next few weeks, I continued with the higher dose of bartonella antibiotics (a large dose, and I didn't know if my liver could handle it), and for the first time in months, after trying so many other things that are too much to go into detail here, I started to improve mentally and physically.

A year on, I have had many ups and downs but gradually getting better and am no longer suicidal. The higher doses of antibiotics and a better understanding of borrelia and bartonella have kept me going. I have a long term plan and may seek treatment overseas where so many Austrailans are heading to lyme clinics that doctors there are sick of seeing us, and can't understand why our government won't accept and address this growing problem.

Everyone knows someone with these diseases, it is spreading while the government remains in denial, and sufferers are treated like second class citizens by the system that is meant to be there to help. If I knew I was going to be safe in the hospital and taken seriously, I'm not sure I would have attempted suicide. But unfortunately many others have already taken their own lives because of all this. This will be remembered as a very shameful time in Australian medical history.