We need to instigate a:
STICK OUT YOUR ARM
Campaign to all practitioners, state health authorities, politicians, et cetera who deny the disease of chronic Borreliosis and its co-infections
We will supply the ticks
Certified Australian, mate
(Although we have feral ticks from South East Asia, so we might get a bit confused)
If there is NO TICK BORNE DISEASE IN AUSTRALIA OR 'LYME' -
Then as a measure of confidence from the nay-sayers STICK OUT YOUR ARM
I'll bring the TICKS
You bring the ARM
They are apparently safe...so you say.
They don't carry Borrelia, or Bartonella, or Babesia, or Erhlichia, or Anaplasma, or Protomyxzoa or anything else that is 'hard to catch' and 'easy to treat'.
I challenge you - STICK OUT YOUR ARM there is no HARM
You may just get 'conversion disorder' or 'somatisation ' or some other condition misdiagnosed as a syndrome or psychiatric
I can only hope that the pharmacological soup you are prescribed won't make you sick
STICK OUT YOUR ARM - or don't have an opinion.
STICK OUT YOUR ARM
Campaign to all practitioners, state health authorities, politicians, et cetera who deny the disease of chronic Borreliosis and its co-infections
We will supply the ticks
Certified Australian, mate
(Although we have feral ticks from South East Asia, so we might get a bit confused)
If there is NO TICK BORNE DISEASE IN AUSTRALIA OR 'LYME' -
Then as a measure of confidence from the nay-sayers STICK OUT YOUR ARM
I'll bring the TICKS
You bring the ARM
They are apparently safe...so you say.
They don't carry Borrelia, or Bartonella, or Babesia, or Erhlichia, or Anaplasma, or Protomyxzoa or anything else that is 'hard to catch' and 'easy to treat'.
I challenge you - STICK OUT YOUR ARM there is no HARM
You may just get 'conversion disorder' or 'somatisation ' or some other condition misdiagnosed as a syndrome or psychiatric
I can only hope that the pharmacological soup you are prescribed won't make you sick
STICK OUT YOUR ARM - or don't have an opinion.
REAL STORY - Con
My name is Con Torrisi. I don’t have Lyme disease. I am a carer and this is my story.
Gianna Denaro is my partner and she has chronic tertiary Lyme disease. We were both healthy high functioning individuals, I worked as a General Manager and she was a Business Administrator. Between us we raised 4 children who had left home and were etching out their own lives. Sometimes the teenage years are difficult so we were glad that was behind us and we were enjoying empty nest status and focused on career and professional growth.
Then one day Gianna told me she hadn’t been feeling well for a while and she was having trouble coping at work. Her job was very demanding and allowed no margin for error or hesitation. She was in a corporate dog eat dog world where you have to be on your toes. I didn’t really understand so when she said she wanted to give up work I thought it was just time for a career change for her. I was in for a rude awakening.
She had trouble seeing straight and everything seemed to be too much to tolerate. She developed a limp and leg weakness and spent a lot of time in pain on the couch. Now, I can fix a lot of things, I can restore old cars, I can build corporate servers and networks, I can save a failing business, I can manage corporate finances and people, but I couldn’t understand what was going with her and I couldn’t fix it. Her GP said it was probably just a virus or stress and did lots of tests. One day we presented because she could hardly walk. Concerned he told us to go straight to Emergency at the Royal Brisbane Hospital. We spent 8 hours there and after a barrage of tests was told they could find nothing wrong. MS was mentioned and were asked to arrange for an MRI. Earliest we could get was a week away. I organised a wheelchair hire to make it easier to get around. We were afraid of what was happening, there were no answers, no reasons, and we didn’t know what to do or where to go for help. Her GP as well as the RBH seemed to be grasping for answers.
Within days even the crinkling sound of me opening a fish and chip wrapper 2 rooms away would have her in agony. She was on the lounge with the curtains drawn. She had a tremor in her left hand, pins and needles on her left side, terrible pain in her neck and the left side of her face which had drooped, and she was virtually paralysed from the waist down. At times she would stop responding and just stare through you like she was phasing in and out. You don’t have to be smart to work out there was something seriously wrong so I called an Ambulance. Back at the RBH the doctors seemed perplexed as to why we were back there and without the MRI so after I explained we didn’t have time and she was deteriorating fast, I convinced them to do it there. More tests…. More doctors…. More questions. MRI and all tests came back clear so we were told she was fine and could go home. “ARE YOU GUYS KIDDING ME. YOU CAN’T BE SERIOUS!” (Where’s Dr House when you need him) I managed to convince the registrar that two weeks before she was a perfectly healthy woman and at the rate she was going she’d be dead in a week so they reluctantly decided to admit her.
More doctors, more specialists no answers. Then they decided it was all a result of stress and depression probably from raising teenage children and they called it “Conversion Disorder” (a mental condition) following a “Stroke Like Event”. It was odd because apart from work stresses life was good and she didn’t feel depressed. We had no idea what that meant so armed with a diagnosis she went to a lovely rehab facility where over the next 4 weeks she learnt how to walk again. Our lives were changing and after work every day I would spend a few hours with her as well as weekends. Over the following months she improved but we were never happy with the diagnosis. Improvement continued until she was almost back to normal and we enjoyed a nice 5 week holiday. Little did we know she was progressing from Early to Secondary stage Lyme. Her condition began to deteriorate slowly. Not like the first time but some symptoms never did clear up, like the electric shock sensations and sensory sensitivity. It was getting worse and there was muscle, joint and bone pain along with deteriorating cognitive functions.
More doctors, and as recommended by the RBH a Psychiatrist and some mind bending drugs. Her GP was lost and we were starting to panic. She got worse and the pain was becoming intolerable. I felt useless to help. Where do we go? What do we do? I hit the internet with a vengeance. The more research I did the more confused and concerned I became. The only things that really fit were nasty things like Motor Neurone Disease (which is terminal) and they ruled out MS and other things long ago. Then I saw a programme on TV about a woman suffering from Lyme disease. It was not the technical description of the disease or the long list of symptoms that made me pay attention, it was how the woman walked and talked. She had trouble finding words and slurred, she was dragging her left foot a little but I felt a strong connection to subtle signals her body language was giving off. There was a definite parallel I could not mistake. That was the ah-ha moment, however over the past year she had progressed from secondary to the tertiary or chronic Lyme stage.
A quick Google search found the Lyme Disease Association of Australia where I began reading. Of the 50 or so symptoms of Lyme she could check off about 45 of them and I couldn’t check off one. I had an email address so I shot off an email and got the names of two Lyme Literate doctors within driving distance. The one with the earliest opening was Dr Andrew Ladhams who at the time was based in Noosa a two hour drive away. With an initial healthy degree of scepticism and suspicion we had a consult, told him our story and listened to what he had to say. He seemed to know his stuff and this thing seemed to fit. That was the turning point.
Over the next 18 months under the Dr Ladhams’ supervision she had changed her diet, and begun an intensive treatment programme. At times the cure seemed worse than the disease but we were committed to this course because we were seeing results. When the antibiotics had finally trashed her gut she had a PICC line put in for IV treatment. At that time we needed weekly visits to the clinic now located in Maleny and daily IV treatments at home. Each visit would result in a day or so of Pharmacy hunting to fill the scripts and I was rapidly becoming expert at sourcing meds, mixing and administering IV. I had decided to work part time from home and relied on unused annual leave to keep a regular income. General Managers can’t work from home effectively and one day in the office isn’t enough so I put a time limit of 30th June on this arrangement. My life was turning into one of a full time carer. She couldn’t drive and sometimes was too sick to manage her meds so managing IV was clearly up to me. Family and friends can’t understand how she can be so sick but not look sick except for a few outward signs. They didn’t understand they only saw her on the good days, I saw her worst and understood more. They don’t understand why she is taking so long to get better, because they don’t understand chronic illness and this particular condition. Why should they, most doctors don’t understand either.
Work life balance is often spoken about but this was crazy. At work I was always worried about getting one of those phone calls where I’d have to rush off. It happened many times. The poor store manager at our local Spotlight store who didn’t know what to do with a wobbly, jerky, crazy woman in the checkout queue. Too many inputs at Spotlight and too much stimulation set her off. Then the time her legs let go during a rare shopping outing with her daughters at Chermside. The wheelchair was back in the car and she only made it to the foyer before she was on the floor. Then the emergency calls for an ambulance when a severe Herx reaction (one of many) stopped her breathing and another time when her liver and pancreas decided to go on the fritz and she was screaming with abdominal pain. Sometimes you get lots of warning, sometimes not, sometimes you don’t know if it will pass or if it won’t. More than one occasion I hit the panic button because things were getting right out of my comfort zone. It’s hard to watch someone you love suffer but I can only imagine what she was going through. Emergency attendants always ask for pre-existing conditions, what meds is she taking, and why does she have a PICC line? We learnt to try and avoid the use the word Lyme, instead we would say “she has Neuroborreliosis”. Sometimes they took us seriously, sometimes they would look at us like we were telling them she had been abducted by aliens and infected with alien DNA. Often doctors would get angry and tell us Lyme doesn’t exist and we were foolish to entertain someone trying to treat it.
My mum passed away unexpectedly in November last year. Events like this make you take stock of your life and what’s important. We never know how much time we have with our loved ones so I gave work 3 months notice to focus on Gianna and to take better care of her and spend more time. That’s 2 careers shot by this disease. My job is now to get us to the point where we can pack up the caravan and shoot through for a few months without constant doctors visits and complex medication. Work can go on hold for a year or two while we battle this thing, win and hopefully convalesce. God I hope the money doesn’t run out.
So, it’s now two years and six months since the initial hospital visit. It’s fifteen months since the Lyme diagnosis, twelve months on antibiotics with 4 of those on a PICC. We turned a spare bedroom into a treatment room that looks like a doctors surgery. I can pronounce the names of two dozen different antibiotics and tell you what they treat and how to administer them. I think I can spot a “Lymie” a mile off and even pick co-infections. The waiting room and treatment room at Maleny are like social reunions because so many are at chronic stage and have to keep coming back. We have made a lot of new friends with a common cause. The medical system had let us down but the few trail blazing doctors that are waging war on this disease are like gravity and the people that need them are drawn in.
Gianna has shown clear signs of improvement measured in obscure ways. What we can say is she is not deteriorating or in extreme pain anymore. But is this just a remission? It’s hard to say if her remaining symptoms are still the illness or permanent nerve damage as a result. Only time will tell. But she can’t watch TV if the camera is not held still or the volume is above 7 even if I can’t hear the TV with the volume below 8. The jerks described as “excessive startle myclonis” make her dangerous when she’s cooking and you don’t dare put your hand on her shoulder in case she hits you in response. She still drags her left foot a little and tires easily but hey, if that’s as bad as it gets we can manage it.
We are committed to “A Little Project Called BITE” because this thing has changed our lives forever. But sometimes after I see others I think we are the lucky ones.
The photo is before Gianna got sick.
My name is Con Torrisi. I don’t have Lyme disease. I am a carer and this is my story.
Gianna Denaro is my partner and she has chronic tertiary Lyme disease. We were both healthy high functioning individuals, I worked as a General Manager and she was a Business Administrator. Between us we raised 4 children who had left home and were etching out their own lives. Sometimes the teenage years are difficult so we were glad that was behind us and we were enjoying empty nest status and focused on career and professional growth.
Then one day Gianna told me she hadn’t been feeling well for a while and she was having trouble coping at work. Her job was very demanding and allowed no margin for error or hesitation. She was in a corporate dog eat dog world where you have to be on your toes. I didn’t really understand so when she said she wanted to give up work I thought it was just time for a career change for her. I was in for a rude awakening.
She had trouble seeing straight and everything seemed to be too much to tolerate. She developed a limp and leg weakness and spent a lot of time in pain on the couch. Now, I can fix a lot of things, I can restore old cars, I can build corporate servers and networks, I can save a failing business, I can manage corporate finances and people, but I couldn’t understand what was going with her and I couldn’t fix it. Her GP said it was probably just a virus or stress and did lots of tests. One day we presented because she could hardly walk. Concerned he told us to go straight to Emergency at the Royal Brisbane Hospital. We spent 8 hours there and after a barrage of tests was told they could find nothing wrong. MS was mentioned and were asked to arrange for an MRI. Earliest we could get was a week away. I organised a wheelchair hire to make it easier to get around. We were afraid of what was happening, there were no answers, no reasons, and we didn’t know what to do or where to go for help. Her GP as well as the RBH seemed to be grasping for answers.
Within days even the crinkling sound of me opening a fish and chip wrapper 2 rooms away would have her in agony. She was on the lounge with the curtains drawn. She had a tremor in her left hand, pins and needles on her left side, terrible pain in her neck and the left side of her face which had drooped, and she was virtually paralysed from the waist down. At times she would stop responding and just stare through you like she was phasing in and out. You don’t have to be smart to work out there was something seriously wrong so I called an Ambulance. Back at the RBH the doctors seemed perplexed as to why we were back there and without the MRI so after I explained we didn’t have time and she was deteriorating fast, I convinced them to do it there. More tests…. More doctors…. More questions. MRI and all tests came back clear so we were told she was fine and could go home. “ARE YOU GUYS KIDDING ME. YOU CAN’T BE SERIOUS!” (Where’s Dr House when you need him) I managed to convince the registrar that two weeks before she was a perfectly healthy woman and at the rate she was going she’d be dead in a week so they reluctantly decided to admit her.
More doctors, more specialists no answers. Then they decided it was all a result of stress and depression probably from raising teenage children and they called it “Conversion Disorder” (a mental condition) following a “Stroke Like Event”. It was odd because apart from work stresses life was good and she didn’t feel depressed. We had no idea what that meant so armed with a diagnosis she went to a lovely rehab facility where over the next 4 weeks she learnt how to walk again. Our lives were changing and after work every day I would spend a few hours with her as well as weekends. Over the following months she improved but we were never happy with the diagnosis. Improvement continued until she was almost back to normal and we enjoyed a nice 5 week holiday. Little did we know she was progressing from Early to Secondary stage Lyme. Her condition began to deteriorate slowly. Not like the first time but some symptoms never did clear up, like the electric shock sensations and sensory sensitivity. It was getting worse and there was muscle, joint and bone pain along with deteriorating cognitive functions.
More doctors, and as recommended by the RBH a Psychiatrist and some mind bending drugs. Her GP was lost and we were starting to panic. She got worse and the pain was becoming intolerable. I felt useless to help. Where do we go? What do we do? I hit the internet with a vengeance. The more research I did the more confused and concerned I became. The only things that really fit were nasty things like Motor Neurone Disease (which is terminal) and they ruled out MS and other things long ago. Then I saw a programme on TV about a woman suffering from Lyme disease. It was not the technical description of the disease or the long list of symptoms that made me pay attention, it was how the woman walked and talked. She had trouble finding words and slurred, she was dragging her left foot a little but I felt a strong connection to subtle signals her body language was giving off. There was a definite parallel I could not mistake. That was the ah-ha moment, however over the past year she had progressed from secondary to the tertiary or chronic Lyme stage.
A quick Google search found the Lyme Disease Association of Australia where I began reading. Of the 50 or so symptoms of Lyme she could check off about 45 of them and I couldn’t check off one. I had an email address so I shot off an email and got the names of two Lyme Literate doctors within driving distance. The one with the earliest opening was Dr Andrew Ladhams who at the time was based in Noosa a two hour drive away. With an initial healthy degree of scepticism and suspicion we had a consult, told him our story and listened to what he had to say. He seemed to know his stuff and this thing seemed to fit. That was the turning point.
Over the next 18 months under the Dr Ladhams’ supervision she had changed her diet, and begun an intensive treatment programme. At times the cure seemed worse than the disease but we were committed to this course because we were seeing results. When the antibiotics had finally trashed her gut she had a PICC line put in for IV treatment. At that time we needed weekly visits to the clinic now located in Maleny and daily IV treatments at home. Each visit would result in a day or so of Pharmacy hunting to fill the scripts and I was rapidly becoming expert at sourcing meds, mixing and administering IV. I had decided to work part time from home and relied on unused annual leave to keep a regular income. General Managers can’t work from home effectively and one day in the office isn’t enough so I put a time limit of 30th June on this arrangement. My life was turning into one of a full time carer. She couldn’t drive and sometimes was too sick to manage her meds so managing IV was clearly up to me. Family and friends can’t understand how she can be so sick but not look sick except for a few outward signs. They didn’t understand they only saw her on the good days, I saw her worst and understood more. They don’t understand why she is taking so long to get better, because they don’t understand chronic illness and this particular condition. Why should they, most doctors don’t understand either.
Work life balance is often spoken about but this was crazy. At work I was always worried about getting one of those phone calls where I’d have to rush off. It happened many times. The poor store manager at our local Spotlight store who didn’t know what to do with a wobbly, jerky, crazy woman in the checkout queue. Too many inputs at Spotlight and too much stimulation set her off. Then the time her legs let go during a rare shopping outing with her daughters at Chermside. The wheelchair was back in the car and she only made it to the foyer before she was on the floor. Then the emergency calls for an ambulance when a severe Herx reaction (one of many) stopped her breathing and another time when her liver and pancreas decided to go on the fritz and she was screaming with abdominal pain. Sometimes you get lots of warning, sometimes not, sometimes you don’t know if it will pass or if it won’t. More than one occasion I hit the panic button because things were getting right out of my comfort zone. It’s hard to watch someone you love suffer but I can only imagine what she was going through. Emergency attendants always ask for pre-existing conditions, what meds is she taking, and why does she have a PICC line? We learnt to try and avoid the use the word Lyme, instead we would say “she has Neuroborreliosis”. Sometimes they took us seriously, sometimes they would look at us like we were telling them she had been abducted by aliens and infected with alien DNA. Often doctors would get angry and tell us Lyme doesn’t exist and we were foolish to entertain someone trying to treat it.
My mum passed away unexpectedly in November last year. Events like this make you take stock of your life and what’s important. We never know how much time we have with our loved ones so I gave work 3 months notice to focus on Gianna and to take better care of her and spend more time. That’s 2 careers shot by this disease. My job is now to get us to the point where we can pack up the caravan and shoot through for a few months without constant doctors visits and complex medication. Work can go on hold for a year or two while we battle this thing, win and hopefully convalesce. God I hope the money doesn’t run out.
So, it’s now two years and six months since the initial hospital visit. It’s fifteen months since the Lyme diagnosis, twelve months on antibiotics with 4 of those on a PICC. We turned a spare bedroom into a treatment room that looks like a doctors surgery. I can pronounce the names of two dozen different antibiotics and tell you what they treat and how to administer them. I think I can spot a “Lymie” a mile off and even pick co-infections. The waiting room and treatment room at Maleny are like social reunions because so many are at chronic stage and have to keep coming back. We have made a lot of new friends with a common cause. The medical system had let us down but the few trail blazing doctors that are waging war on this disease are like gravity and the people that need them are drawn in.
Gianna has shown clear signs of improvement measured in obscure ways. What we can say is she is not deteriorating or in extreme pain anymore. But is this just a remission? It’s hard to say if her remaining symptoms are still the illness or permanent nerve damage as a result. Only time will tell. But she can’t watch TV if the camera is not held still or the volume is above 7 even if I can’t hear the TV with the volume below 8. The jerks described as “excessive startle myclonis” make her dangerous when she’s cooking and you don’t dare put your hand on her shoulder in case she hits you in response. She still drags her left foot a little and tires easily but hey, if that’s as bad as it gets we can manage it.
We are committed to “A Little Project Called BITE” because this thing has changed our lives forever. But sometimes after I see others I think we are the lucky ones.
The photo is before Gianna got sick.
