ROSS RIVER VIRUS -EPA
CASE STUDIES
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Case 1 - My Husband
My husband had a mild case and first contracted the disease early in 1992. At this time he was not diagnosed as suffering from RRV. In this instance, the Doctor was led astray by my husband. Also, he did not mention the symptoms again to the Doctor as he was not experiencing the EPA symptoms at the time he saw the Doctor for any other problem.
In the acute stage, he experienced pain in knees, elbows, wrists, hand, and ankles. Generally ached all over, had headaches and experienced chronic fatigue. He felt frustrated because he was always tired and did not know why. He continued to work throughout this period.
Although, I did things for him and helped him up out of bed and chairs. I have to admit that I was not sympathetic, I thought it was self-inflicted, that he was suffering from poor nutrition. As I have a two hour trip to and from work each day, I have to leave early in the morning so he gets his own breakfast and lunch.
In the chronic stage, he is experiencing the same symptoms as he had during the acute stage. The attacks were about every three months for the first four years. The attacks seem to be about six monthly now although he often suffers from excessive tiredness even after a good 8 hours sleep.
He was not diagnosed with the illness until 1995 and it was estimated that he had had the virus 3 years ago at this time. He was sent for a test after we both experienced a reoccurence at the same time and I suggested he get tested next time he saw the Doctor. Even after I was diagnosed, we did not recognise that he had had RRV until 1995.
Until diagnosed his treatment consisted of painkillers, rest and vitamens and minerals. He would often rub some ointment on to his joints such as Dencorub Ice, or Tiger Balm and since being diagnosed he now rubs Metsal Arthritic Gel into the affected joints, takes ArthRight and Vitamen supplements particularly Calicum complete, BC complex and Echinacea.
My husband developed an alergy to bread made with wheat at some time within the first 12-18 months of being infected with the RR virus He can eat rye bread as long as it has no wheat flour in it.
Case 2 - My experience
I was diagnosed in early March 1993, on my first visit to the Doctor (the same Doctor my husband saw the previous year). My experience was far more debilitating than that experienced by my husband. He has had an extemely difficult time trying to cope with everything working, housework, daily washing and night after night of distrubed sleep, particularly during the first nine months of my illness particularly when he was having reoccurrences of his own at this time.
Acute Stage
The acute stage lasted for nine months, I experienced excruciating pain in every joint of my body including my spine. The pain was so severe I felt nauseous most of the time. Because of the pain in my hips and spine, I could not lie down and spent most of the 9 months sleeping sitting up with a mob of very soft pillows at my back. I also had headaches and a cough.
I had fever and sweating which would go on for 5 hours every night (like a clock from 11pm to 4am) and be so severe, that my husband would have to change my clothes and the sheets on the bed at least twice and many times 3 times a night. The gradual reduction in the length of time of the fever each night was the first sign I had that the acute stage was coming to an end.
In the first month, I was so exhausted I would often sleep 12-14 hours at a stretch. A trip to the toilet in the ensuite adjoining the bedroom would so exhaust me I would sleep for 4-6 hours. Moving my position in bed would cause me to sleep 2 hours.
My joints would often by pink and feel hot to touch particularly, my elbows, knuckles, knees, hips and ankles. The inside of my elbows were always the worst and often looked as if I had a severe burn.
Another symptom was blisters on the inside cheeks of the mouth they burst and leave raw area. The inside of my cheeks had so many blisters that they were both completely raw. The Doctor tried all sorts of medication trying to help. I was even sent for test for cancer of the mouth and any other thing they could think of. After 4 months, the Doctor prescribed an gel ointment that seemed to treat the problem.
My most frightening symptom was blindness. I could not see or recognise any furniture in the room, if the curtains were open, I could recognise that it must be daylight as looking in that direction it did not appear to be so dark. It usually lasted at least half an hour and then I would have blurred vision for awhile probably another half an hour before my sight returned. This always occurred after I had been asleep. I never knew with each occurence if my sight would come back.
Treatment - I was given anti-inflamatory medication and painkillers by my Doctor and told to rest. He could not provide any other information to assist me. I decided to check other sufferers and find out what they were doing and what worked for them. If anyone mentioned they knew someone who had RRV, I would ask for their phone and ring them. I rang people all over Australia, and I tried everything that anyone suggested that worked for them. I found Reliv Now reduced the fatigue quite a bit. The painkillers the Doctor gave me were find for the headaches bu had no effect on the joint pains. I finally found a tube of Metsal Gel which my husband had for some pain in his ankle so I tried that and it worked. I found it took about a half an hour to have an effect. Since that time it has been my major method of treating the pain in the joints. I have found only Blue packet gives any relief, the creams had no affect on me. I also took Echinacea on advice but I was warned not to take too much just one a day. This was taken to prevent other viruses. I also found warm Epson Salt baths were helpful and also being in the ocean but not when it is cold.
I became alergic to codine with serious repercussions 6 months after being infected with RRV.
Chronic Stage
For the first three and a half years after the acute stage, I would have a reoccurrence every 6 weeks after the previous session stopped. I never knew how long a session would last they ranged from 6 days to 4 months. The symptoms were the same as the acute stage except, I did not have any blindness and fever was only mild and sometimes absent.
At 3˝ years after completing the acute stage, I found a cousin who had contracted the virus was taking KH3. I thought I would give it a trial. Other than that, I was continuing the same treatment as I did for the acute stage except after 18 months, I was unable to get Reliv Now and took other multi-vitamen supplements. Metsal Gel was my main treatment for the pain. The KH3 never made any difference to the way I felt. However, the change I noticed was that the attacks did not seem to last as long and seemed to get further apart. When I ran out of KH3, I noticed that the attacks seemed to be last longer again.
After I had passed 2˝ years mark after contracting RRV, I managed to continue working without needing to take any time off because of the illness for a further 3 years. However, at 5˝ years after first becoming a victim of RRV. I had to have 3 days off work. The pain was the worst it had been since the early stages of the illness and it was so exhausting trying to cope with the pain I kept falling asleep. I am now trying an old anti-stress-pep up recipe, I have had for years and it seems to be working. The attacks currently reoccur every three-four months except when I experience illness or a major stress then I am likely to get another attack within hours of the event or within a couple of days with an illness. I never go anywhere without a tube of Metsal Gel.
I caught RRV in January 1995 and was diagnosed in February 1995 but it
took three blood tests as the disease takes a while to develop in your
system. My first test was negative but the doctor was sure I had it so
took another test a week later - this came back borderline so we waited
another week and tested again - this one came back positive. My husband
and daughter had also caught RRV at the same time although I seemed
to have the most severe attack. I blame this on the fact that I had
Rhuematic Fever as a child and RRV really seemed to latch on to my
already weakened joints and bones. The doctor started us all on KH3
immediately and the severity eased off after a month or so but the attack
still lasted at least six months. I usually get a "flare up" each January
which lasts a few weeks.
Latest attack
I am having a very acute reoccurence now - as bad as the original one.
I feel alright if I just sit around but as soon as I get up to do anything
I realise just how bad I am. It is extremely painful just trying to go out and
do the grocery shopping for half an hour and I have no strength - can't even stand
to hold my purse in my hand for anything more than a few minutes as my hands,arms
and shoulders just so painful. I am suffering extensive pain in my left hip, my
feet,legs,back, neck,shoulders,arms and hands - Bascially ALL OVER!!!!
I am extremely fatigued and could easily sleep all day given half a
chance. I am slightly feverish again from time to time and had funny pain
in my chest the other day - almost thought about calling the ambulance
but it settled down after a few hours.
I was "sort of" diagnosed with Ross River Virus 6.5 years ago. At the time of diagnosis I was experiencing extreme debilitation with symptoms that correspond with the other people you have listed on your site. The problem that I have is that the doctor at the time said that I only had long term antibodies to the disease at the time of the blood test which was about a week after the onset of the illness. I had never been ill before. A friend who is a doctor said that the early tests for the disease were unreliable and that I probably did have the disease.
I contracted it in Townsville and a neighbour who also had it at the same time is still suffering also. I am sure that is what it is. I spent the first year barely able to walk and was extremely depressed. I have had the rashes and the sore eyes and painful neck and joints. All this time later I have still got joint and muscle pain and aches. I have spent about 3 thousand dollars on alternative remedies and have had absolutely no success with any of them. I am gradually improving and at the rate of current progress suspect it will be about another year until I recover.
The thing of interest that I thought I would impart is the recent diagnosis that a rheumatologist made. He said that I was deficient in complement 3 which is a component of the immune system known to be depleted in chronic bacterial infections. (It causes many of the symptoms that are associated with RRV including the rashes etc.) No mention seems to be made in the literature of the effect of viral infections on complement depletion.
I wonder how many Ross River sufferers are tested for complement 3 deficiency and whether if this is common in other people may be a key to further understanding of the disease. As sufferers know the lack of evidence of severe pain and aches means that you often have little credibility in the eyes of the observer.
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