My Lyme Disease story

• Name: (on behalf of my daughter • Age: ( • My address is: • My postal address is: [same as above] • You can contact me on: • I want my story to be public

Hope I expect that my story of Lyme Disease may be unique, and it’s important that I share it. I say that because my story is one of success, of true hope, that shows why early detection of this disease is so important. We need to do something so that this story becomes the norm, rather than the exception.

In summary It’s a relatively complicated story, which I’ll elaborate in detail later in this document, but in summary the evidence of our journey over the last 3-4 years would indicate:

• Although unknown at the time, my daughter contracted Lyme Disease at 5 years of age in Wisconsin USA from an insect bite to her scalp • Early antibiotic treatment of the initial fever, and of a further occurrence 2 months later (thought to be an ear infection at the time), successfully killed off a lot of the bacteria • Although completely symptom free for 2 years, was still carrying a remnant of this bacteria under the surface • Through extremely good fortune, coming across material about Lyme disease published by the Lyme Disease Association of Australia, we concluded that the data points from a few years earlier highlighted a potential risk could be carrying Lyme Disease even though she had no symptoms, and we decided to diligently pursue this • The evidence of the journey of the 18 months since then strongly suggests that was in fact carrying this bacteria, that it was multiplying under the surface, and that with the wisdom and support of Dr we have been able to successfully treat it in a proactive way • We are on top of this disease and have almost certainly proactively saved from a life of significant chronic suffering

As a father, I well up with tears of joy and gratitude when I think of how fortunate we are to have prevented this health disaster in She is such a loving and vibrant child, who lights up every room she ever enters. It would be heart-breaking to see her cut down by this insidious disease.

At the same time, I well up with tears of mourning for the families who aren’t as lucky as we have been. To see their children gradually spiral downwards, year after year with no answers, must be devastating. I had a taste of this in periods of uncertainty through treatment, and can’t imagine how hard the full measure of this must be. My message Through my journey with I am convinced that:

• Lyme Disease is real • The bacteria can live and grow in people for a long time, and that a single short course of antibiotics is not enough to kill it off • Early detection and treatment of this bacteria is critical, and we must find ways to reliably test for it

I know that a part of this senate inquiry is related to whether Lyme can be contracted in Australia. My story does not touch on that aspect, as contraction was in the USA.

In some ways, this may be a good thing. Because what my story highlights is that even if it was definitely proven that Lyme could be contracted in Australia, we would not be out of the woods. contracted Lyme in a region of the world well known as a hotspot for Lyme Disease. Even though that was the case, it would be almost impossible in the current medical system in Australia to detect and treat this disease. We were exceptionally lucky, whereas we need to have our situation become the normal case.

The details I will now give a chronological account of story.

September 2012

• We were in Wisconsin USA. Knowing ticks were prevalent in the area (but knowing nothing about Lyme Disease), I did a tick-check one night on scalp. • I came across a small insect attached to her head that needed to be removed with tweezers. • 1 week later while in California at Disneyland, became sick with a strong fever. • A hotel doctor gave her an injection of antibiotics, and then an oral course for 1 week • After 5 days, recovered.

November 2012

• became sick with a fever, which lasted for 2 weeks. • Multiple visits to our local GP resulted in advice to have her rest, and to continue to monitor it. • After 2 weeks, started losing her hearing. • I was growing concerned and did some internet searching on a “fever of unknown origin” and on hearing loss. This search returned information about tick bites and Lyme Disease. I read that Lyme Disease can be contracted in Wisconsin, and I remembered about the insect on scalp. • We went to visit our local GP again. I asked the question as to whether could have Lyme Disease, based on the incident with the insect in Wisconsin 2 months previously. • Our GP was sceptical about my suggestion, and said that the hearing loss indicated an ear infection and prescribed a course of Amoxil. I wasn’t convinced, because the fever had dwelled for 2 weeks and was a strange fever, however I had read that Lyme Disease is treated with antibiotics, and so rested in the fact that either way we were doing the right thing. • The antibiotics worked. fever subsided and her hearing returned.

December 2012 – May 2014

• was symptom free, vibrant, full of life.

June 2014

• One day I happened to come across some material from the Lyme Disease Association of Australia. I read through it, remembering back to the events of a few years ago. • What I read raised in my mind the possibility, however small, that could actually be carrying Lyme Disease: o The events of 2 years ago would be consistent with effects of contracting Lyme Disease. o I read that a normal course of antibiotics is often not enough to completely kill off this bacteria. o I also read that this bacteria can live and grow under the surface in someone for many years with no symptoms. I read of three stages of Lyme Disease, that that someone can be symptom free for many years, but then have this bacteria take hold after it has significantly spread • I emailed the Lyme Disease Association of Australia to tell them what had happened 2 years ago, and asked whether they thought there was any risk could be carrying this disease. They said it would be worth investigating. • Through the Lyme Disease Association of Australia I got the name of Dr , a GP who was open to having a discussion with patients about Lyme Disease. • I met with Dr and told story. He said that he thought there was a possibility she could be carrying this bacteria, and suggested we try some tests. He also thought that enuresis (bed wetting) could be caused by Lyme Disease. had never slept through the night without wetting the bed, and it was hard to know if she just hadn’t learned to do this, or whether the Lyme Disease was causing it. • We got blood tests done locally in Australia through Dorevitch, blood tests sent to a specialist lab in Germany called InfectoLab, and a urine test sent to Australian Biologics in Sydney. Overall, this testing cost about $2000 to do.

July 2014

• We got test results back. There were some indicators that could in fact be carrying this bacteria: o Dorevitch blood test: . Borrelia burgdorferi (Lyme Disease) – Low positive (noting it could be a false positive and was sent for further testing) . Globulin – 16 g/L (normal range 22-39) . ESR (Westergren) – 18 mm/hr (normal range <10) o InfectoLab blood test: . IgG p41 positive, but all other antigens on Western Blot negative . CD 57 NK cell numbers 10 compared to the normal range InfectoLab describe as 130-360 • We sought multiple opinions on this: o Local GP. He was sceptical, and said that she wasn’t showing any symptoms so would advise just putting this aside. He did agree to refer us to our Paediatrician though. o Paediatrician. He did some searching on Lyme Disease, and agreed that it seemed plausible she could be carrying this bacteria, and that if there was a chance of that then some appropriate prophylactic antibiotic treatment might be appropriate, given the low risk of treatment compared to the potentially devastating effect of the disease in chronic form. He said he would do some further investigation. He reached out to contacts across Australia, but could not find anyone who had knowledge about Lyme Disease. He also followed up on the Dorevitch blood test, and said that after the more detailed testing that the Lyme Disease low positive had turned out to be a false positive. Based on this false positive, he recommended that we put aside any concerns around Lyme Disease. o Dr . He felt that there were enough indicators to suggest this bacteria was a possibility, and recommended some gentle prophylactic antibiotic treatment just in case.

August 2014

• had a course of Amoxil and a course of Rulide for 1 week. • About 2 hours after starting the antibiotics, developed some symptoms: o Ear ache o A feeling of “fuzziness” in the head o Fatigue o Swolen glands • After 3-4 days these symptoms disappeared. Dr said that these symptoms were consistent with a Herxheimer Reaction common when antibiotics are started with someone carrying the Lyme Disease bacteria and the bacteria is started to be killed off. • One month later we gave another 1 week course of Amoxil and Rulide. This time she had no reaction and was fine the whole time through the treatment.

October 2014

• Given the evidence of the initial reaction to the antibiotics, which was another indicator suggestive she was carrying this bacteria, Dr advised we give a natural immune boosting herb (Astragalus) for a few months which we did.

April 2015

• started exhibiting some symptoms. o She is very fit, but we noticed she started having a shortness of breath / starving for air when running or playing. She would be fine for 5-10 minutes, but then need to stop to significantly catch her breath. One minute later she would be fine to go for 5-10 minutes again, but then the same thing would happen. This issue was independently brought to our attention by her PE teacher at school who said that she had gone from being the fastest runner in the class, to having to stop many times with a struggle to breathe. o She started exhibiting pain inside her kneecap at night, on a few occasions. She has always had growing pains in her shins, but this was a different pain. It was deep in the knee joint. o She started having a nauseousness and feeling off in the stomach relatively frequently. • We visited Dr and he said that all of these symptoms are consistent with the Lyme Disease bacterial infection. He said that the starving for air was common with people with both the borellia bacteria, and a common babesia co-infection. • Given the growing evidence of this bacteria lurking in her system, and the seriousness it can have if it is left to grow in the body under the surface, we decided to do some further antibiotic treatment.

Further freatment

• Dr suggested a treatment cycle that consisted of: o Amoxil o Rulide o Flagyl o Malarone (the Malarone was due to the risk of the larger Babesia bacteria) • The rationale was that this bacteria is very hard to kill off, and pulsing of various different antibiotics is a proven effective technique to kill it. • The goal was to not overtreat but to do enough that if the bacteria was present that it would be killed. • In each cycle, it was a single course of a normal child course of each medication. • Overall we did three cycles of treatment, one per month from April through June 2015. • In a particular month, the duration of the treatment was around two weeks.

Observations

• Very soon after starting the first round of antibiotics, symptom of starving for air disappeared. She quickly returned to her prior form of being the fastest runner in the class. • Co-incidently, our appointment with the Incontinence Clinic had come up at around the time we finished the first round of treatment. They gave us a bed wetting alarm for her enuresis at night. • Dr had previously said that Lyme Disease in children commonly causes enuresis, but given had never had dry nights ever in her life, it was hard to tell if it was related to the Lyme or not. • We found over the course of the treatment a strong correlation between enuresis and taking the antibiotics, suggesting Dr was right that it was related to the Lyme. o She started off wetting the bed every single night, and most nights was not waking to the bed wetting alarm. o As soon as we started the second round of antibiotics, she was dry that very night. o The next few nights she had a small accident and quickly woke. She then went for 3 weeks being dry except for a single wet night (which interestingly coincided with a single day where her starving for air reappeared). o After we finished the second cycle of treatment, she mostly stayed dry for another 2 weeks. o She then regressed back into wetting the bed each night. o Once we started the third cycle of antibiotic treatment, the wetting stopped again and she moved into another long dry streak, with the occasional accident. o Through all of this time, the alarm only seldomly achieved its purpose of triggering her to wake and get up. During the antibiotic treatment would wake up to wee without any issues. It seems like she already had the desired connection in her brain to wake to wee, but that the bacteria was interfering with her system in the way it is purported to do.

July 2015 - NOW

• In the month after the treatment, and through to now, she was remained generally well. • She will still have an upset stomach from time to time • Very occasionally she will wet the bed on a single night • But there is nothing strong enough to suggest that these things are related to a continued remnant of Lyme bacteria • We will remain vigilant, and check in with Dr if anything starts arising that is concerning (for example, if bed wetting or starving for air were to return)

Gratitude I would like to express my gratitude to the Lyme Disease Association of Australia. Without their advocacy I would not had the information that allowed me to be proactive in early treatment of this disease.

And I would like to especially express my gratitude to Dr . Without his care, support, and wisdom, we would not have been able to take the steps we have to prevent this disease from becoming chronic in He is a gentle and courageous doctor, who truly cares for his patients, takes the time to listen, and is has to operate in such tough conditions with the uncertainties that surround this disease.

Please do whatever can be done to research and find more definitive ways of testing for this disease. The quality of life of many patients and their families are at stake.

Let’s find ways to have many more success stories like

In love and gratitude,