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Disease Boy
As members of the 4wd community there is a chance that you will be exposed to this, so I thought I would post it here as well as the location that it was written for. This story is not written to scare you, nor is it written for you to feel sorry for me. This story is written with the hope that someone might read it who is either sick or knows someone who is sick and that this information may help them. This is a story of 10 years of pain that did not need to be. A story of Lyme.
The start
After 20 years service with the Army I moved to the south eastern suburbs of Melbourne, Victoria, where I started my new life with my wife and young children. During my army service I had a few medical conditions to deal with and a few aches and pains, but in 2004 those pains started to get worse. The main area was my knees. No matter what I did I seemed to be unable to get relief from the pain that got worse every month. The pain was unusual and the only way I have been able to describe it is that it feels like someone has a flat tipped screw driver jammed under my knee caps and is now trying to use that screw driver to prise my knee caps away from my knees.
During this time there were a few other things happening in my life. The most notable and memorable was tonsillitis. This was not normal tonsillitis, in that it took two complete rounds on penicillin to bring this under control. It did not end with this and I ended up getting tonsillitis four times that year and each time it was just as bad as the first and with that much medication other things started going wrong.
The treatment
My GP referred me to a knee surgeon/specialist who organised xrays and MRI’s. His comments stick in my head to this day, “You have damage, you have problems, but the total of your damage does not equate to your level of pain you are experiencing”. By this time I was relying on a walking stick and had started taking pain killers to remain mobile.
The next visit was to a rheumatologist, looking for signs of arthritis, but nothing was found. The months went on and the visit to the doctors continued and knee replacement surgery was considered but not acted on, due to my age. I then started trying to live with this pain and extensive physiotherapy was started. I understood the reason for the physiotherapy and gave it my best, but try running around a small swimming pool with those screw drivers under both knee caps, continually pushing out, trying to push your knee caps off your knees, it just messed me up more. I was having trouble getting people to understand how much pain I had.
It was now about two years on and by this stage I was on eight Panadeine Forte a day and I was spending a lot of time in a wheelchair. I would survive work with the pain killers and a walking stick but I was in such a mess that by the time I got home I was wheelchair bound for the rest of the time. The pain killers seemed to only take away about 10% of the pain on a good day and did not help at all on a bad day, even basic things like cleaning my teeth would be so painful that I would have to psych myself up for it. At this time it was suggested by doctors that the problem might be psychological. The pain was all in my head. One of the things backing this was that we had noted that when we went on holidays, camping, that I had less pain and I was less reliant on my wheelchair. I knew it was not in my head, but what other reason was there for this? Then my brain started to go into a fog. It was put down to the pain medication, but I knew I could not think straight and my family was also noticing that things were just not right.
By this time I knew I could not keep working, with both my difficulty in getting around work and my lack of brain function I could see that there was no way I was going to be able to keep going. My boss was good and helpful, but I worked in information technology and if your head can not function, it’s just not going to work. Suicide became a real option. Mortgage stress and school fees for my young children were the only things keeping me going.
Relief (for a while).
So I went back to the GP to get another prescription for penicillin (yes I am still getting tonsillitis during this) but I could not get in to see my normal GP. The GP I did see, to this day I believe “he saved my life”. He gave me the prescription for the penicillin but more importantly he wanted to know why I had trouble walking. I told him my story and he gave me the name of a naturopath. He said that this naturopath was good with both natural medicines and normal western medicines and that it would be worth me getting this looked at from another angle.
A few weeks later I visited this naturopath with my wife. She spent about 60 minutes with me and did a number of tests. Not the normal type of blood tests that I was used to, but tests none the least. Near the end of the visit she detailed that I had become “intolerant” of a number of foods. Not allergic like anaphylactic, but that every time I was eating these foods I was effectively poisoning myself. My stomach was seeing these foods as poison and that this was effecting all of my body.
We walked away from that meeting thinking that this person was a nut case. The testing was ridiculous. But she had not asked me to buy anything obscure. She did not ask me to pay anything other than a reasonable fee for her time and she had outlined what food I was able to eat. We decided to give it a go as we had nothing to lose and the diet began. I was allowed meat, green vegetables, fruit and a couple of other things as long as they did not contain any dairy, wheat, artificial flavouring or additives and a long list of other things. Alcohol was forbidden.
We were not expecting to see any changes, but a good healthy diet can not hurt. Right? Within one week of being on the diet I no longer needed the wheelchair. It was now wrapped in plastic in the garage. After another two weeks I had given up the walking stick and the pain killers. I went from eight Panadine Forte a day to none in just two weeks. I had my life back.
My New Life
The changes in my life were amazing. I went from being pushed in a wheelchair to chasing my children around the garden. I also had my brain back, I was able to think again. The fog had gone and we understood why I was always better when we were on holidays, it was the change in diet when we were away. We soon learned how to live with my diet but my next problem started, starvation. Not starvation in the true sense, but I could just not get enough food to keep me going. There are only so many apples you can eat in a day and over the next 18 months I lost about 20kg. I was weighing less than I did when I joined the Army at the age of 17 and eating away from home was problematic. We had learned that if we were out I could eat plain boiled rice (not the flavoured type from a Thai or Japanese takeaway) or hot chips (without any seasoning). One time I was so hungry and I was unable to get enough food, so I had some potato wedges, without the sour cream. I reacted badly. About 15 minutes after eating the wedges I was dizzy and having trouble with balance. Within the hour I was home, in bed and in a pool of cold sweat. My body was shaking uncontrollably and I could not stop it. I was in bed for two days and it was another day before I was able to go back to work. I had learned the lesson of straying from the diet.
A new hope
Things were starting to go wrong again. We did not know what the cause was but I was starting to get infections and have other issues with my body. Then Channel 7’s Today Tonight ran a story about a group of naturopaths who specialised in allergy issues. What the heck, let’s give it a go. If we thought the last naturopath was crazy then the only way we could explain this group of naturopaths was as “one step left of witchcraft”. Their testing and treatment of me was bizarre and just not logical. They confirmed that I was intolerant of the items detailed to us over a year ago, and then added a lot more. They gave me one treatment and we left with both my wife and I agreeing that we were not going back.
I don’t know how to explain the next day, but it started with me going to the toilet. Not wanting to go into too much detail, but I did a poo like I have never seen before. It cleaned me out and I felt better. I felt stronger. I ended up going back to the clinic and being treated for all of the foods that I was reacting to and I started to get my life back. After about 3 months I was able to eat normal foods, go to restaurants and start doing things again. The strange infections also stopped.
Life continued and I was cured, so we thought. About a year later things started going downhill, but we could see what was happening and we headed back to the naturopath. We were advised that I was again reacting to a number of items that included coffee, alcohol, eggs, diary and wheat so I immediately went back onto the diet and I was treated over the next few months to get my body back on track. Drinking alcohol was always an issue, but if I reacted to beer I found that I could drink wine. When I started reacting to wine I would switch to Drambuie.
Stability
The cycle of good health for about six months to a year followed by what we could only call “outbreaks” continued for years. We knew that as long as we budgeted to go back to the clinic for a series of treatments once or twice a year that we would be able to keep our lives going what was generally considered as normal. Planning several visits to the clinic before any holiday enabled safe travel, but the outbreaks continued and each time they were different. Sometimes my knees would get bad and I would be back in the wheelchair for a couple of months, once I got shingles, other times I would get infections in strange places that should not be written about. Each time it was different, but we always knew that my knees would be the weak spot. My wife and now teenage children renamed me “Disease Boy” and by this time, the wheelchair was always at the ready.
Diagnosis
In March 2013, my wife noticed a strange shaped lump on my neck. With my army service and the time I had in the sun it was thought to be cancer but a quick biopsy showed it to be a granuloma annulare (yep I did not know what that was either, google it if you want to). We were told not to worry, but this got my wife reading and we soon identified that these were a random autoimmune response and that it was common amongst people with the autoimmune disease like Lupus. Further reading and we could see how my symptoms over the years were close to this and we thought we had an answer and back to the GP we went for a referral to a rheumatologist.
The rheumatologist acknowledged my issues, but stated that my symptoms did not indicate Lupus, and he referred me to an immunologist. I told my story again to the immunologist at Melbourne’s Alfred hospital. For over 10 years I have been telling my story to doctors and they all acknowledged I was sick, but they all told me to go away. I was sick, but not in their specialty. This doctor was different. He was an arrogant bastard but he did something different. He told me that he had no idea what was wrong with me but be promised to not give up. More blood was taken but still no answers. He then asked me to go away, stop seeing the naturopaths and to get sick. He wanted me to have symptoms.
In Jan 2014 the symptoms started and by March of that year I was starting to hurt in more ways than one. I could not stand for more than a couple of minutes, I am back in my wheelchair and the infections started again. Having a couple of beers gave me a hangover that lasted to well into the afternoon of the following day. I headed back to the Alfred and I was told I had a positive blood test for Lyme disease. He would not tell me much more, other than I had to now see a doctor who specialised in infectious diseases and that he would organise the paperwork. I went back to the car and cried. I don’t know if this crying was relief for finally having an answer, or something else but I know that I have cried a lot over the last 10 years.
Now I am heading back to the naturopath to get my body back into the best possible place it can be before I start treatment, as the treatment is said to be devastating. When they kill the bug it causes it to implode and release toxins that attack the central nervous system, but that is a story that is yet to come.
Why?
What is Lyme disease? If you want a formal definition you can find it on the internet, but in short terms it is a disease that is spread by a tick that is about the size of a pin head; so small that most people never know that they have been bitten. This disease has been identified in medical journals as “The Great Imitator” as many with this are wrongly diagnosed with Chronic Fatigue, Parkinson’s, Alzheimer’s, Rheumatoid Arthritis and psychological disorders. It starts with flu like symptoms and if treated at that stage all you need is a standard course of antibiotics. If not treated in the initial period the disease locks itself into your brain and other organs (which is why it is not easy to find with a blood test, it’s not in your blood) then things get more complicated. Once it is at this stage there is no cure, only hope for remission. The treatment can last for years and cost thousands of dollars a month.
The reason my symptoms were not spotted for so long is that as far as the Australian government is concerned, there is no Lyme disease in Australia. As a result there is no information getting out to doctors. My GP was amazed that I was even tested for Lyme disease, but after the research that I have done, there are 10s of thousands of people in Australia with Lyme disease. In America it is estimated that for every 1,000 people correctly diagnosed with Lyme disease there are another 10,000 not diagnosed, and each year approximately 30,000 cases of Lyme disease are reported in America. See the first youtube clip below to see the issues of getting treatment in Australia and the second clip to see an inspirational story of a young girl with Lyme disease.
Do you know someone who is chronically ill? Get them to ask the question, “What is Lyme?”
Further information is available at
https://www.youtube.com/watch?v=se2wanLhoL8
https://www.youtube.com/watch?v=1KISKYTJ6Ow
http://www.lymedisease.org.au/
http://www.livingwithlymedisease.org/
The start
After 20 years service with the Army I moved to the south eastern suburbs of Melbourne, Victoria, where I started my new life with my wife and young children. During my army service I had a few medical conditions to deal with and a few aches and pains, but in 2004 those pains started to get worse. The main area was my knees. No matter what I did I seemed to be unable to get relief from the pain that got worse every month. The pain was unusual and the only way I have been able to describe it is that it feels like someone has a flat tipped screw driver jammed under my knee caps and is now trying to use that screw driver to prise my knee caps away from my knees.
During this time there were a few other things happening in my life. The most notable and memorable was tonsillitis. This was not normal tonsillitis, in that it took two complete rounds on penicillin to bring this under control. It did not end with this and I ended up getting tonsillitis four times that year and each time it was just as bad as the first and with that much medication other things started going wrong.
The treatment
My GP referred me to a knee surgeon/specialist who organised xrays and MRI’s. His comments stick in my head to this day, “You have damage, you have problems, but the total of your damage does not equate to your level of pain you are experiencing”. By this time I was relying on a walking stick and had started taking pain killers to remain mobile.
The next visit was to a rheumatologist, looking for signs of arthritis, but nothing was found. The months went on and the visit to the doctors continued and knee replacement surgery was considered but not acted on, due to my age. I then started trying to live with this pain and extensive physiotherapy was started. I understood the reason for the physiotherapy and gave it my best, but try running around a small swimming pool with those screw drivers under both knee caps, continually pushing out, trying to push your knee caps off your knees, it just messed me up more. I was having trouble getting people to understand how much pain I had.
It was now about two years on and by this stage I was on eight Panadeine Forte a day and I was spending a lot of time in a wheelchair. I would survive work with the pain killers and a walking stick but I was in such a mess that by the time I got home I was wheelchair bound for the rest of the time. The pain killers seemed to only take away about 10% of the pain on a good day and did not help at all on a bad day, even basic things like cleaning my teeth would be so painful that I would have to psych myself up for it. At this time it was suggested by doctors that the problem might be psychological. The pain was all in my head. One of the things backing this was that we had noted that when we went on holidays, camping, that I had less pain and I was less reliant on my wheelchair. I knew it was not in my head, but what other reason was there for this? Then my brain started to go into a fog. It was put down to the pain medication, but I knew I could not think straight and my family was also noticing that things were just not right.
By this time I knew I could not keep working, with both my difficulty in getting around work and my lack of brain function I could see that there was no way I was going to be able to keep going. My boss was good and helpful, but I worked in information technology and if your head can not function, it’s just not going to work. Suicide became a real option. Mortgage stress and school fees for my young children were the only things keeping me going.
Relief (for a while).
So I went back to the GP to get another prescription for penicillin (yes I am still getting tonsillitis during this) but I could not get in to see my normal GP. The GP I did see, to this day I believe “he saved my life”. He gave me the prescription for the penicillin but more importantly he wanted to know why I had trouble walking. I told him my story and he gave me the name of a naturopath. He said that this naturopath was good with both natural medicines and normal western medicines and that it would be worth me getting this looked at from another angle.
A few weeks later I visited this naturopath with my wife. She spent about 60 minutes with me and did a number of tests. Not the normal type of blood tests that I was used to, but tests none the least. Near the end of the visit she detailed that I had become “intolerant” of a number of foods. Not allergic like anaphylactic, but that every time I was eating these foods I was effectively poisoning myself. My stomach was seeing these foods as poison and that this was effecting all of my body.
We walked away from that meeting thinking that this person was a nut case. The testing was ridiculous. But she had not asked me to buy anything obscure. She did not ask me to pay anything other than a reasonable fee for her time and she had outlined what food I was able to eat. We decided to give it a go as we had nothing to lose and the diet began. I was allowed meat, green vegetables, fruit and a couple of other things as long as they did not contain any dairy, wheat, artificial flavouring or additives and a long list of other things. Alcohol was forbidden.
We were not expecting to see any changes, but a good healthy diet can not hurt. Right? Within one week of being on the diet I no longer needed the wheelchair. It was now wrapped in plastic in the garage. After another two weeks I had given up the walking stick and the pain killers. I went from eight Panadine Forte a day to none in just two weeks. I had my life back.
My New Life
The changes in my life were amazing. I went from being pushed in a wheelchair to chasing my children around the garden. I also had my brain back, I was able to think again. The fog had gone and we understood why I was always better when we were on holidays, it was the change in diet when we were away. We soon learned how to live with my diet but my next problem started, starvation. Not starvation in the true sense, but I could just not get enough food to keep me going. There are only so many apples you can eat in a day and over the next 18 months I lost about 20kg. I was weighing less than I did when I joined the Army at the age of 17 and eating away from home was problematic. We had learned that if we were out I could eat plain boiled rice (not the flavoured type from a Thai or Japanese takeaway) or hot chips (without any seasoning). One time I was so hungry and I was unable to get enough food, so I had some potato wedges, without the sour cream. I reacted badly. About 15 minutes after eating the wedges I was dizzy and having trouble with balance. Within the hour I was home, in bed and in a pool of cold sweat. My body was shaking uncontrollably and I could not stop it. I was in bed for two days and it was another day before I was able to go back to work. I had learned the lesson of straying from the diet.
A new hope
Things were starting to go wrong again. We did not know what the cause was but I was starting to get infections and have other issues with my body. Then Channel 7’s Today Tonight ran a story about a group of naturopaths who specialised in allergy issues. What the heck, let’s give it a go. If we thought the last naturopath was crazy then the only way we could explain this group of naturopaths was as “one step left of witchcraft”. Their testing and treatment of me was bizarre and just not logical. They confirmed that I was intolerant of the items detailed to us over a year ago, and then added a lot more. They gave me one treatment and we left with both my wife and I agreeing that we were not going back.
I don’t know how to explain the next day, but it started with me going to the toilet. Not wanting to go into too much detail, but I did a poo like I have never seen before. It cleaned me out and I felt better. I felt stronger. I ended up going back to the clinic and being treated for all of the foods that I was reacting to and I started to get my life back. After about 3 months I was able to eat normal foods, go to restaurants and start doing things again. The strange infections also stopped.
Life continued and I was cured, so we thought. About a year later things started going downhill, but we could see what was happening and we headed back to the naturopath. We were advised that I was again reacting to a number of items that included coffee, alcohol, eggs, diary and wheat so I immediately went back onto the diet and I was treated over the next few months to get my body back on track. Drinking alcohol was always an issue, but if I reacted to beer I found that I could drink wine. When I started reacting to wine I would switch to Drambuie.
Stability
The cycle of good health for about six months to a year followed by what we could only call “outbreaks” continued for years. We knew that as long as we budgeted to go back to the clinic for a series of treatments once or twice a year that we would be able to keep our lives going what was generally considered as normal. Planning several visits to the clinic before any holiday enabled safe travel, but the outbreaks continued and each time they were different. Sometimes my knees would get bad and I would be back in the wheelchair for a couple of months, once I got shingles, other times I would get infections in strange places that should not be written about. Each time it was different, but we always knew that my knees would be the weak spot. My wife and now teenage children renamed me “Disease Boy” and by this time, the wheelchair was always at the ready.
Diagnosis
In March 2013, my wife noticed a strange shaped lump on my neck. With my army service and the time I had in the sun it was thought to be cancer but a quick biopsy showed it to be a granuloma annulare (yep I did not know what that was either, google it if you want to). We were told not to worry, but this got my wife reading and we soon identified that these were a random autoimmune response and that it was common amongst people with the autoimmune disease like Lupus. Further reading and we could see how my symptoms over the years were close to this and we thought we had an answer and back to the GP we went for a referral to a rheumatologist.
The rheumatologist acknowledged my issues, but stated that my symptoms did not indicate Lupus, and he referred me to an immunologist. I told my story again to the immunologist at Melbourne’s Alfred hospital. For over 10 years I have been telling my story to doctors and they all acknowledged I was sick, but they all told me to go away. I was sick, but not in their specialty. This doctor was different. He was an arrogant bastard but he did something different. He told me that he had no idea what was wrong with me but be promised to not give up. More blood was taken but still no answers. He then asked me to go away, stop seeing the naturopaths and to get sick. He wanted me to have symptoms.
In Jan 2014 the symptoms started and by March of that year I was starting to hurt in more ways than one. I could not stand for more than a couple of minutes, I am back in my wheelchair and the infections started again. Having a couple of beers gave me a hangover that lasted to well into the afternoon of the following day. I headed back to the Alfred and I was told I had a positive blood test for Lyme disease. He would not tell me much more, other than I had to now see a doctor who specialised in infectious diseases and that he would organise the paperwork. I went back to the car and cried. I don’t know if this crying was relief for finally having an answer, or something else but I know that I have cried a lot over the last 10 years.
Now I am heading back to the naturopath to get my body back into the best possible place it can be before I start treatment, as the treatment is said to be devastating. When they kill the bug it causes it to implode and release toxins that attack the central nervous system, but that is a story that is yet to come.
Why?
What is Lyme disease? If you want a formal definition you can find it on the internet, but in short terms it is a disease that is spread by a tick that is about the size of a pin head; so small that most people never know that they have been bitten. This disease has been identified in medical journals as “The Great Imitator” as many with this are wrongly diagnosed with Chronic Fatigue, Parkinson’s, Alzheimer’s, Rheumatoid Arthritis and psychological disorders. It starts with flu like symptoms and if treated at that stage all you need is a standard course of antibiotics. If not treated in the initial period the disease locks itself into your brain and other organs (which is why it is not easy to find with a blood test, it’s not in your blood) then things get more complicated. Once it is at this stage there is no cure, only hope for remission. The treatment can last for years and cost thousands of dollars a month.
The reason my symptoms were not spotted for so long is that as far as the Australian government is concerned, there is no Lyme disease in Australia. As a result there is no information getting out to doctors. My GP was amazed that I was even tested for Lyme disease, but after the research that I have done, there are 10s of thousands of people in Australia with Lyme disease. In America it is estimated that for every 1,000 people correctly diagnosed with Lyme disease there are another 10,000 not diagnosed, and each year approximately 30,000 cases of Lyme disease are reported in America. See the first youtube clip below to see the issues of getting treatment in Australia and the second clip to see an inspirational story of a young girl with Lyme disease.
Do you know someone who is chronically ill? Get them to ask the question, “What is Lyme?”
Further information is available at
https://www.youtube.com/watch?v=se2wanLhoL8
https://www.youtube.com/watch?v=1KISKYTJ6Ow
http://www.lymedisease.org.au/
http://www.livingwithlymedisease.org/
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