Sam Stosur, 2011. GETTY IMAGES

My battle with Lyme disease

I first started getting symptoms in July 2007. I was at Wimbledon playing and woke up one day with a lump in the side of my neck. I got some tests done as they didn’t know what it was and they weren’t too sure what they were looking for. Nothing came out of the test.

As the next few days followed I got more symptoms, which included inflamed glands, puffiness in my face and neck, a rash all over my body, extreme tiredness, headaches, body aches, swollen hands and feet.

Each day I would have something new and the doctors weren’t sure what was going on.

I think I saw four different doctors at Wimbledon. I had blood tests done and they didn’t show anything too definitive but it was thought it could have been rubella. Once I returned home it was decided that was the diagnosis.

I took about six weeks off and thought I started to feel OK. I was still puffy looking all over like I had gained weight but my weight hadn’t changed. No one could tell me not to start playing again so I practiced a little and then went to the US to play one lead-up tournament before the US Open and then the US Open.

I was nowhere near prepared enough and lost badly and then at the US Open I lost in the first round. Worse still, I was absolutely exhausted after the first four games of my first-round match.

I stayed in New York to practice with my coach for another week as he was coaching some other players too. We decided I needed to get fit again and lose the puffiness look I had going on. We practiced on court for about 1 to 1.5 hours a day and then cardio on the bike each day. It wasn’t very high intensity but I really found it difficult.

After training like this for five or six days, I started getting chest pains during dinner and periodically it would hurt to breathe. I tried to not think much of it and continued to go out with my friends but as the night went on it got worse and worse.

I went to hospital at about 3 am for tests and they couldn’t really find anything. I thankfully had the help of one of the trainers from the WTA with me and we left the hospital at about 8 am and went back to another one around 11 am as my pain was getting worse. By this stage I was also feeling nauseous.

I had more tests done and the doctors still couldn’t find anything. I spent the next day in my hotel room and didn’t go anywhere and felt somewhat OK so I decided to fly home to my training base in Tampa, Florida.

On the flight home I started getting a shocking headache and by the time we landed my head was pounding. I went to a friend’s place as I felt terrible and as that afternoon went on the pain got worse and worse.

I went home that evening and tried to go to sleep but by 6 am I couldn’t stand the pain any more and called my friend back to get her to come get me and take me to hospital.

Once arriving there they did a couple of tests and told me I had sinusitis so they sent me home with some painkillers and that was that.  It turned out I was allergic to what they gave me so that made me sick and I knew the pain I had was not sinusitis.

I spoke to one of the WTA doctors on the phone that afternoon and she told me to go back to hospital and get more tests done. By about midnight the doctors came in to tell me I had viral meningitis and I had to stay in hospital.

I had a spinal tap to relieve some of the pressure and pain I was getting and stayed in hospital for the next three days. From that point I went back home and got the post-tap headache, which they said I would get and for the next seven or eight days laid in bed or on my couch and slept as much as possible. Whenever I sat or stood up I would get a pounding headache but as long as I was horizontal I was OK.

It was a horrible week and I didn’t leave my apartment for the whole time.

Thankfully the same friend who took me to hospital lived close by and would bring me food and go shopping for me as I couldn’t leave. My dad was then able to come over from Australia and he spent the next few weeks with me. Once I was able to walk around without getting headaches I went to see an infectious disease specialist in Tampa as it was decided what was happening to me was all part of the same thing and we had to work it out.

After a couple of weeks of seeing this doctor and  having several different tests and visits to him he diagnosed me with Lyme disease. I had never heard of it and didn’t know what it was. He explained to me it is extremely hard to diagnose and you have to base it on symptoms as well as what the tests come back with and he was sure that’s what I had.

I went on two weeks of oral antibiotics followed by four weeks of intravenous antibiotics twice a day, four days a week followed by another two weeks of oral antibiotics.

I was told to not do any exercise during this time and really try to do as little as possible. I pulled out of all the remaining tournaments for the year and based myself in Tampa during this time. After this period it was decided I was probably well enough to fly home to Australia but was told I still had to take it easy.

I eventually started back doing very easy exercise and followed the WTA trainer’s and doctor’s advice very closely as they said I could relapse if I did too much too soon as my immune system was still working so hard to keep me healthy.

My exercise  program started with a 20-minute walk every other day and keeping my heart rate under 120. That was nearly impossible, so I did this for a week then started walking every day then bumped it up to two 30-minute sessions and then I could gradually keep increasing the volume as long as I kept feeling healthy.

I started tennis practice in late February/March and trained until my first tournament at the end of April. I was worried the travel and jetlag was going to be too much so I went to the States much earlier then I would normally to acclimatise myself to the time change and weather conditions and made sure I didn’t start training there too hard too fast.

From this point I played two Challenger tournaments and then took two weeks off, played a WTA event in Rome, took another week off and then played the French Open.

There were some days leading up to the French that I felt really tired and unwell so whenever this happened I took the day off and really monitored my health and how I was feeling before I would train anymore. By July I really felt quite good and continued my playing schedule and haven’t looked back since.

On realising how dangerous Lyme can be I’m really glad I followed what the specialists told me and really took it slow to get back to normal. I think the thing that helped me a lot is that I was in the USA when I was eventually diagnosed. It is nearly impossible to know when I contracted it as I travelled through a number of European countries before falling ill in London. From there I went  to Australia where Lyme isn’t recognised and then back to the States.

Since  getting back to full health I have never felt any symptoms come back or relapsed in any way.

  • Skylla

    Well done Sam for beating this disease and continuing your fabulous
    career. I just wanted to mention that the low pressure headaches
    following a spinal tap/lumbar puncture are completely unnecessary. You
    just have to ask them to do a blood patch after the procedure where they
    take a small amount of your own blood and inject it into the site of
    the puncture. This seals the wound and prevents any leaking of spinal

  • Betty Trestain

    I have lyme and morgellonsthey have teken everything and noone believes me

  • Linda Harvey

    Hi Gill ,I have been suffering same. It takes a long time to come good, I have a Dr who specializes in this and other associated diseases.good luck.

  • Linda Harvey

    Hi Betty after 6yrs of going to skin specialists my daughter inlaw said i should see her doctor.As soon as he saw me he said “I know what this is ” I remember i just burst into tears.After so many doctors saying it was all in my head i have hope. Keep looking for a doctor who cares .If you let me know where you are i can email his name and number .

  • Rasunah

    We know of a Dr. working locally on the Sunshine Coast who may be able to support you. Please call us on 07 5449 0600

  • Steve

    Hello, try the NIIM Clinic in Hawthorn. Lyme literate GPs who also offer a range of conventional and complementary treatments including whole body hyperthermia and intravenous nutrient therapy.

  • Frances

    Linda, may I have the doctor’s name and number. I live in Darling Downs region.

  • Stephanie Edmonds

    Hi Sam, I Just read your article and I am so glad to hear that you are back to full health. Recently one of my friends was diagnosed with Chronic Lyme Disease after being misdiagosed for 8 months. Unfortunately due to this fact, she now suffers chronic symptoms such as; Seizures every 2-4 hours. We are currently looking at putting on a benefit for my friend Tahlia to raise funds for a new treatment and also awareness for Lyme Sufferers. I have attached a video that her sisters made illustrating the effects that this disease has had on her. The benefit is to be held in September and was wondering if there was anyway that you would be interested in coming along and sharing your story? To tell you a little about Tahlia she is only 20 years old, turning 21 in May. She had a dream to pursue a career in the performing arts and has been a singer, dance, actress for most of her life residing in the hunter valley region. Each week her parents bring her down to Sydney to get her introvenous injections and her mum changes her PICC line personally. Tahlia is a fighter much like you and inspiration to all who know her. Let me know if this is a possibility.

    Kind Regards

    Stephanie Edmonds ([email protected])

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  • Julie

    My mum has been diagnosed with transverse myelitis in march and can’t walk anymore. Now we heard of someone else being bitten by a tick with lymes disease. My mum gotten bitten about 4 years ago in maleny. She thought it wad just a mosquito bite but now dad I wondering if it was a tick. Hmm

  • Sarah Styles

    Hi your story is very ecouraging. Where and how were you treated? Thanks Sarah

  • Janice Ferguson

    Is there a doctor on the Gold Coast Queensland?

  • beuzos

    I have just read your story and thank you for sharing. My daughter is 15 and has been very unwell for 12 months and not attending school. I am so disappointed in Australia’s awareness of this disease. We have been sent to 11 specialists with nothing found. She has 20 lesions on her brain and suffers all the Lyme symptoms even ending up in hospital several times. She is currently undergoing Lyme testing which they are sure she has it, I believe so too. Now I just need to know the best places in Australia for treatment, or do I need to head to Germany? Glad to hear you are symptom free.