TestimonialChronic Fatigue Syndrome - 4 years
At
first it was just an occasional sleeping episode where I would sleep for
anywhere from 18 to 72 hours, almost as if I’d been hit by a virus. I would
be very weak and perspire a lot and then it would disappear as suddenly as it
had come and I would be left feeling weak and shaky for a day or two and then
I would feel fine again. The sleeping
episodes continued throughout 1999 and 2000 with them gradually becoming more
frequent. I had applied for, and received, a place in a course at university
for 2001 but by late 2000 the sleeping episodes had become so frequent that
they were nearly coming on top of each other and in between them I felt very
drained and fatigued. I went to my G.P. and she did a lot of blood tests and
could find nothing wrong. I started going through medical books and reading
up on anything I could find that might possibly be causing my symptoms and
asking the doctor to test me for them. All the tests came up negative and I
came to a dead end, with my doctor offering no further ideas for diagnosis or
treatment except to tell me that I probably just needed some rest!! At this time I
was also seeing a chiropractor for another problem. I told her what had been
happening with me and she tested me for the presence of viruses by measuring
my strength while holding a vial of something (I’m not sure what!) in my
hand. I was much weaker while holding this and was unable to put up much of a
fight if she pushed down on my arms or legs. She then tested me with some
other vials and said that I was testing stronger with zinc. So I bought a
zinc supplement and started taking it. While I’m unsure if it was the zinc
supplement that brought it about, I magically improved for the better just
before I was to start university. For the first
half of 2001 I was really well and enjoying university but in the three weeks
holidays following the mid-year exams I really went downhill and spent most
of it either sleeping or feeling extremely tired. I spent the rest of 2001
struggling to get my university work done. I had some good days but mostly I
felt very tired and some days I was so fatigued that I would have to go to my
car in between classes and have a lay down or a sleep. I made it through the
rest of the year at university and then pretty much collapsed. During that
summer I went to another G.P. and another battery of blood tests were done,
nothing was found except that I had at some time had glandular fever but that
I no longer had it. I spent 2002
gradually getting worse; I felt like I was slowly dying! I had not been able
to go back for my second year at university. I slept a great deal of the time
although I never woke up feeling like I had slept, usually I felt like I had
been hit by a truck! When I was awake everything was a major effort. My head
and body felt like they were heavily weighted down and my brain felt like it
was in a fog. I had trouble concentrating and couldn’t think very clearly.
The smallest thing could seem overwhelming. Often I did not have the energy
to do anything but lie on the bed; I would not even have the energy to read.
I felt very isolated and alone but, as I often didn’t even have the energy
to talk on the phone, I lost contact with many people. I don’t know what I
would have done without my mother’s help; she was my rock through it all. The doctor’s
were treating me as though it were all in my head, I think this was partly
because of the depression I had gone through in 1998 and also because they
didn’t know what was wrong with me. So during 2002 I tried many other
things to improve my health. I tried naturopathy, homeopathy, iridology,
traditional Chinese medicine, and many different vitamin supplements. I never
went out anywhere except to have treatment and those outings were an ordeal
as I felt so ill. I had still been writing poetry occasionally throughout my
illness but even this stopped. Late in 2002 a
friend gave me the name of a CFS specialist and I went for a consultation and
had blood tests taken. Just after this I became so ill that I was unable to
go to follow up visits with the CFS specialist. I became bedridden and was
staying with my mother so she could look after me. All of my symptoms had
gotten worse and I also became very sensitive to light and loud noise. I felt
like I was weighted down to the bed and it was so difficult just to lift an
arm or a leg. I would sweat profusely and feel like I was burning up and I
had absolutely no appetite and found it difficult to make myself eat. I
became overwhelmingly depressed and just wanted to die. My mother went to the
CFS specialist and explained what was happening. He gave her a definite
diagnosis of CFS from my blood tests and a prescription for a medication to
try me on. This helped slightly and my mother kept going to my appointments
and the specialist kept giving her different drugs to try me on. Eventually I was on a cocktail of drugs but I was back on my
feet although still very ill. I was then able to go to appointments at the
specialist myself but this really didn’t offer much hope. He just kept
experimenting with my drugs trying to find a combination that would give me
greater improvement. In May 2003 I
came across information about hyperbaric oxygen therapy on the internet and
then found the Spinal Rehabilitation Group in Melbourne. At the initial
consultation with Dr. Hooper he advised me to have MRI’s of my brain and
spine done to check for other conditions. No-one else had even suggested
investigating this before. He also sent me for some very specialised blood
tests to check for infections, I had never had any of these tests done before
either. I also began to take Rehab Plus. At the next appointment I was very
relieved to find that the MRI’s showed that there were no abnormalities in
my brain or spine. The blood tests showed that I had a rickettsial infection
and I was put on antibiotics for this by Dr. Howard. I also started having
eight hours of HBOT a week coupled with electro-acupuncture and vitamin/amino
acid injections. After about
twenty hours of HBOT I began to notice an improvement. I started having short
periods where the heaviness and brain fog would actually lift almost
completely. At these times I was able to think more clearly and I could do
things without it being a big effort. I felt like I was waking up from a
nightmare! It was such a relief to get a break from it sometimes and I began
to believe that I might actually get well again. By forty hours these periods
were much longer and much better. Everything didn’t seem overwhelming and I
began to actually enjoy doing some things again. It was like a miracle, I had
forgotten what that was like! I remember once I was playing music while I was
doing some house work and I started dancing around the house. I suddenly
realized what I was doing and stopped dead and laughed out loud, I couldn’t
even remember the last time that I had done that. I even started writing
again! I’m now at a little over sixty hours and although my health is still fluctuating overall it has improved out of sight. I still have some down periods but they are nowhere near as bad and they are getting shorter and fewer. In the good periods I feel pretty much back to normal. I still get tired more quickly and sleep more than I used to but as I am still having HBOT I think this will just keep improving. I am slowly picking up the threads of my life again and can actually imagine a future. Words can’t express my gratitude to Dr. Hooper for his research, hard work and dedication to making this treatment available. '
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