Kristin from Newcastle

Kristin Clulow- Newcastle, NSW

Kristin: PGS Victim

UPDATE: My name is Kristin. I’m 28, and live in Newcastle, Australia. Three years ago, I received two out of the three Gardasil injections. Following these, I sustained a myriad of health problems. My immune system and nervous systems were eaten away, the mylein sheath surrounding my nerves dissolved, my white blood cells were attacking themselves, and my cerebellum was switched off. I was unable to speak, walk, write and eat. I would tremour repeatedly. I was believed to have ADEM and was given IV Immunogloublin for 12 months. I underwent painful rehabilitation and extensive exercise to attempt to regain some of my former body as I knew it. Fast forward three years, and it has been worth it. I have most function back. There are still many things that I cannot do, but I’m determined to get these back. I recently completed my Masters of Teaching (Secondary), and most importantly, my cerebellum has switched back on.

This is a miracle, and has my doctors stunned. Really, who recovers from irreversable brain damage?!

If I can do it, then so can you. You don’t know how strong you are until you have to be. When I was at my worst, I had two options: Sink or Swim. Choose to swim. Take control of your life and show everyone how amazing you are! Get medical professional who believe your story, surround yourselves with awesome friends and family, and for me, having faith and relying on God was and is imperative to my recovery.

There is light at the end of the tunnel – it’s not just a train! If you want to talk to someone, add me on facebook (Kristin Clulow) or email me at kristinclulow@live.com.au.

KRISTIN’S ORIGINAL STORY:  Firstly, I must make a disclaimer, although this is a website dedicated to Gardasil victims, there is no medical proof that directly links my symptoms to the vaccine, however extensive personal research and the opinions of highly trained medical professionals point to one trigger – Gardasil.

I am 26 years old. I had two shots of Gardasil – May and August 2008. From this time, my life changed. Before I got sick, I worked four different jobs (100+ hours a week) – I worked at a top accounting firm in business development/ marketing/ events, I managed a performing arts school (450+ class enrollments), I worked in retail at a newsagents in customer service, and prepared tax returns. I constantly ran between jobs – but loved it. I bought my first house at 21 as well as renovating it, another house, and a three storey building. I was constantly on the go, always looking for the next project. I had a degree – Bachelor of Business (double major in Industrial Relations / Human Resources & Management), as well as completing various other courses. I was highly regarded by my peers and management at my workplaces, and was always deemed to be an excellent worker. I was quite good musically and artistically. I was at my final grade in piano and had plans to finish my music studies and obtain teaching qualifications. I was fit and healthy, and was quite a tom boy, taking part in most things. I didn’t drink, smoke, take drugs or do anything that could harm my body. I was not overweight (I am about 55kgs). I loved being outside, playing sport and socializing with friends. I was extroverted and outgoing.

In March 2008, 2 months prior to my first shot, my marriage broke down, which is bound to cause stress and a decrease in my immune system, which may have impacted on this. I moved house, got a new job, and enjoyed my new found single life. In May, I got my first shot. Two weeks after this, I fell at karate (playing leap frog for warm up) and broke my left foot. I should mention that I was quite tough and didn’t often break bones or have injuries. I mean, we were doing exercises the week before and I kept going even after blood was coming through my uniform from my scraped elbows. I didn’t think it was broken, but knew I had an early meeting at the office the next morning, so I thought best to get it strapped up right.

I broke the ‘little toe’ bone and was restricted to a moonboot and crutches and rest & elevation for 6 weeks (a fantastic fashion statement!). That didn’t happen. I started a new job as an Executive Assistant to the Managing Director at a property development firm the next week, so I lived on painkillers for the next few weeks and still went out most nights. I was due to go to Thailand in July but I cancelled.

I didn’t relate anything at this point as being Gardasil related, I just put it down to being clumsy. I got my second needle in August 2008, soon after I came off crutches. In September (fathers’ day weekend, about four weeks later), my eyesight went. On the Thursday night, my eye began to hurt, so I took my contacts out and put my glasses on. It continued to get worse on Friday, it became redder, and my eyesight got worse so I went to the GP and an eye specialist who informed me that my contact had scraped the skin off my eye. Mind you, it has never done this before or since. I was given drops and cream and told not to see for the weekend. Me being me though, I had to work the next day at the Newsagents, so I drove (stupid idea!) about 30 minutes where I was promptly told I was an idiot and to go home and rest. My eye was in agony now so I did that. I was later informed that I could have gone blind. My eyes cleared up and were fine. Everything then started to gradually happen. I started feeling sick – like morning sickness (I assume) – nausea all day. I would look at food, know I had to eat it, but would throw it up each night. I was so tired but couldn’t sleep at night. I would doze on and off in the midst of throwing up. It must be noted that I loved food – I was not in any way bulimic – but it felt like that. I thought it was just a bug and that I would quickly get over it. I went to the doctors (the same place as I got the injection) and was told it was a pinched nerve and that I would get over it.

I’ll mention at this point that I had told my GP about my marriage breakup and subsequent events, and my broken foot, and they were aware of this prior to the shot, but still administered it – and did not warn me of any potential side effects. I was going to physio for my foot so I could regain my balance and coordination. I can’t recall why but I had to get marbles out of a jar one at a time and put them back in. I struggled with this – weird I thought. The physio recommended that I go back to the GP and get a referral to see a neurologist (once again, I sought assistance from the same people who gave me the vaccine).

They said there was no proof of anything being wrong from their tests (mind you, it was an ear examination and a knee reflex test). I was told it would be months before I could get in to see a Neurologist. I was getting sicker by the day, and couldn’t understand why. It was just like I was being poisoned. I was still working insane hours, and by this stage, had lost my handwriting, which is not good when you’re in charge of organizing some very busy people! You learn to rely on your memory and typing skills, and compensate however you can.

To make things worse, I was now dragging half of my body around as I had paralysis to my right side. I lost the ability to run, dance, jump and was losing my ability to walk. I walked like a duck, could not keep shoes on and I had no balance or coordination. I had to learn how to do everything with my left hand. I was having vertigo blackouts and would fall down stairs (yes, I fell down concrete ones too). I would see things, and know they were there, like a coffee table – but I would run into them. I could no longer wear heels. I started getting tremors. This made it even more difficult to do things. My whole body would shake; I couldn’t even carry a drink or plate of food without spilling it everywhere. I was getting brain fog and double vision and oversight in my right eye

In November, my granddad passed away. In the space of a few months, my world as I knew it had disappeared – I had lost all that I knew – my husband, my job, my home, my health, a family member – no one should have to go through this. I must mention also, that my immune system was shot. So on top of this, I would get every cold and flu that surfaced. But I would be out of action with it for a week and be impacted worse than everyone else. Everyone was telling me it was ‘stress’ – I knew it wasn’t. Stress does not do this.

I went and saw my parents and stressed something was wrong. I must say, I am not a drama queen, and will only go to the doctors when I am on my death bed. Mum got me in to see a doctor that same week. I got in to see a GP straight away (Dr Ted Bennett) who knew there was something wrong but to my immense frustration he couldn’t explain it. He simply wrote ‘bizarre’ on the referral and got me in to see a Neurologist (Dr Michael Katekar) the next week. He sent me for an MRI scan, diagnosed me as having MS (as my symptoms were similar – there was no evidence on my scans however), and he admitted me to 3 days intravenous Methylpredisolone treatment. This treatment had little effect. I felt sick, sweaty, but still somewhat the same.

I went for more scans as there was no proof that I had MS. I had heaps of tests, sought Eastern methods of treatment and attempted everything to make myself feel better, all with no lasting improvement. I had MRI / CT scans / X-Ray tests for (inter alia): Thyroid, Sarcoidosis, MS, Brain Tumour, Stroke, Back Scan, Front Scan, 2 x Spinal Taps, Visual Evoke potentials, Sensory Evoke Potentials, Brain stem Evoke response Audiomentry (Bera), 2 x EEG, Petscan, Many Blood tests for Lupus & HIV (amongst others).

I gave up my executive assistant job role in December 2008 as I didn’t know what was happening to me. I knew I wasn’t normal but didn’t know why. I had January off to rest and had to force myself to get up off the couch – for an active girl that you couldn’t pin down, it was abnormal. I went to see a Neurologist in Sydney (Prof. Michael Halmagyi) to get a second opinion. He told me that, in his opinion, and the opinion of others, it was the vaccine. By June, sixteen girls had presented to him with similar symptoms. They had all responded to Methylpredisolone treatment. I informed him that I had this treatment in November but had not responded. He admitted me to hospital to have five days of this treatment. To say that I was sick when I got out of hospital would be an understatement. I was sweating, hallucinating, dizzy, less coordinated, couldn’t speak normally or eat normally. I went back to my old job at the newsagents and felt sick every day.

The next few months (February 09 – July 09) showed further decline. My motor skills were getting worse, my speech was much worse, as were the tremors. My days were jam packed full of work, physio, doctors, scans – and meanwhile you’re still expected to eat properly, exercise, sleep 8 hours a night, work 40 hours a week – it was impossible. I was wrecked carrying around half my body, trying to speak semi-normal. I gave up work in July and thought, for the first time, my life is about me. For the first time, I’m being selfish. And it felt good!

At the advice of Prof Halmagyi, Dr Katekar and Dr Michael Barnett (my immunologist) I went back to hospital for 5 days of Human Immunoglobulin treatment, called Sandogoblin. This was administered intravenously. This medication, which I believe helped save my life, had to be purchased from the company that manufactures Gardasil in Australia. I also had a PET scan (Google it) a few weeks before this and the results came back when I was in hospital – there were 2 main areas of concern – my ovaries were overactive, and my cerebellum, which controls my motor functions, had switched off – it wasn’t diseased, it had simply turned off, like a light bulb. There was no guarantee that this would ever switch back on. I refused to believe it. I was so sick of being sick and that made me more determined.

I had an immediate ultrasound of my ovaries, which showed that there was no problem. Every 28 days I have a ‘top up’ of this treatment (I now get a drug called Octogam which does the same thing) and this, all being well, will continue indefinitely. I have improved gradually and slowly but it’s a lot better than going downhill. My days are now filled with the gym (2 hours of cardio, weights, stretch, aqua, swimming and hydro), Occupational Therapy, Speech Therapy, cooking and cleaning. I have found that the Nintendo Wii is awesome for coordination, and the Singstar is great for speech. For a list of any other exercises, please contact me – I’m happy to help! From a process of elimination I have been diagnosed with an illness called ADEM (once again, Google it). Basically, the myelin sheath that surrounds my nerves has been eaten away. Dissimilar to MS patients, the sheath should grow back with the help of the treatment and good old fashioned hard work exercises. This diagnosed illness can be caused by a vaccine and cause paralysis down one side of the body. From Google, a definition is as follows: Acute disseminated encephalomyelitis (ADEM) is a neurological disorder characterized by inflammation of the brain and spinal cord caused by damage to the myelin sheath. The myelin sheath is the fatty covering which acts as an insulator on nerve fibers in the brain. ADEM may occur in association with a viral or bacterial infection, as a complication of inoculation or vaccination, or without a preceding cause. Onset of the disorder is sudden.

Symptoms, which vary among individuals, may include headache, delirium, lethargy, coma, seizures, stiff neck, fever, ataxia, optic neuritis, transverse myelitis, vomiting, and weight loss. Other symptoms may include monoparesis (paralysis of a single limb) or hemiplegia (paralysis on one side of the body). The disorder occurs in children more often than in adults.

Last week, there was an article in a few Australian newspapers that links Gardasil to MS symptoms and all girls with this have made a full recovery (music to my ears!). It must be noted that I, nor anyone in the known history of my family has had MS or any such disease. The only issue that I had was cysts on my ovaries as a teenager, for which I went on the contraceptive pill. There is a strong history of cancer in my family (hence the injection being administered), but we have since found out that Mum does not carry the gene, so it therefore cannot be passed on to me.

So, what is next? Although I am not currently working, my days are dedicated to exercise and therapy. I have applied for University next year, to do a postgraduate degree – Master of Secondary Teaching. This will be two years full time, which will allow me time to recover. I am continuing to improve, and I am determined to get my health back to 100% – to wear heels, to play sports, and to dance. I cannot wait to work again. I have lots of plans, including educating girls in a similar situation. Being sick has made me realize the important things in life.

Comments

  1. Thank you for sharing your story.

  2. Thank you Kristin. You are such an inspiration. You are so strong and have such a determination to beat this. My daughter reads your posts and you inspire her to keep fighting.

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