I have got my daughter back

Discussion in 'Fibromyalgia Main Forum' started by tansy, Jul 22, 2006.

  1. tansy

    tansy New Member


    Jane Colley writes:

    At the beginning of this year Elizabeth celebrated her
    seventeenth birthday. She had decided that she would like
    to have a day out in London but was too ill to leave the
    house. Things were not going well. Just before Christmas
    she had given up her struggle to continue attending school.
    She was very unwell and after nine years of ill health
    was continuing to deteriorate.

    I was at my wits end. I knew that there was something
    seriously wrong. By chance I was put in touch with
    someone who is well informed on ill defined illnesses
    such as ME. I was told Elizabeth would never get better
    unless I got some help for her. An internationally
    renowned environmental health specialist doctor was
    recommended to me.

    Elizabeth was offered a raft of tests and immediately
    decided she wanted to be tested for everything. They
    took 26 phials of blood, as well as urine and stool
    samples. Over the next few weeks the results came back.
    Many of her tests were carried out abroad and just about
    every test came back with abnormalities.

    Borrelia burgdorferi was detected in separate tests at
    different labs, together with very high levels of
    Epstein Barr, very low ADP to ATP reconversion, serious
    problems with moulds, lead poisoning and multiple food

    Elizabeth says she feels that she spent nine years inside
    a very claustrophobic box, surrounded by packaging, with
    thick layers of card pushing down on her. Everything was
    firmly stuck down with red and white tape marked "Fragile".

    Like so many parents of children who are diagnosed with
    ME, I very soon decided that my top priority had to be
    to keep her safe and at all costs out of the hands of the
    psychiatrists. Because we truly wanted her to get better
    and resume school life when her health improved most of
    our energy went into ensuring that she always kept up
    with her academic work. Her attendance record was
    appalling. However, she never gave up and in 2005 sat
    her GCSE's, mostly at home in bed. She was unwell in
    fifteen of the exams but still achieved straight A stars
    and A's.

    The TYMES Trust had provided us with invaluable support
    with many of the problems we had encountered along the
    way. I had contacted their helpline on many occasions
    and received some excellent help. I was asked if I would
    like to join the helpline and was glad to do this as I
    wanted to put something back and try to help others who
    were in a similar situation.

    I spoke to some lovely people. The story was always the
    same, but what really began to hit me was just how many
    of these children were not getting better. Increasingly,
    I started to think outside the box, read more and more
    widely and started to question the wisdom of how I had
    tackled her illness. For years we heeded the advice of
    the ME charities to rest and let her body heal itself.
    I kept going back to Dr Byron Hyde's "The Complexities
    of Diagnosis". Elizabeth was getting progressively
    worse. I read a great deal about chronic ME, but was
    not prepared to accept that this had to be her future.

    We are six months down the road. Elizabeth is well and
    truly out of that box. She is receiving treatment on a
    number levels. She protects herself from food allergies
    with a vaccine, takes large amounts of supplements,
    and is part way through a protocol of aggressive
    antibiotic treatment. She has been very brave, some
    days have been diabolical, but throughout she has been
    steadfastly determined and stuck to the regime.

    Last weekend I picked her up from the station, she had
    just spent four days in London. She looked wonderful.
    Beautiful, shining blue eyes, a wonderful complexion,
    smiling from one side of her face to the other. The
    weight that piles on when she is most ill has gone.
    She is very proud of her slender waist and exceptionally
    flat stomach. She no longer looks like a ghost, sleeps
    normally, and her hands and feet are no longer cold.
    The changes are amazing. People comment to me that she
    looks totally different. As she walks down the street
    radiating happiness people turn to look at her.

    After so many years I have got my daughter back. Things
    are still difficult and there are many challenging days.
    After a break of four months she has started to study
    again. In September she starts at a language college,
    and next summer will be off to New Zealand for her gap
    year. On her way back she is going to the Olympic Games
    in Beijing and on her return will read French at
    university. She is looking forward to everything with
    such relish.

    Elizabeth is investing everything into improving her
    health and takes things very steadily. Her improved
    state of wellbeing means everything to her. Tomorrow
    she is having a session with a personal trainer to start
    to get fit again and she regularly does detox baths
    and has just started to use a portable sauna. She is
    determined to fight the Borreliosis.

    I had to stop helping the TYMES Trust. I find it hard
    to come to terms with the fact that the advice I heeded
    for so many years contributed to the seriousness of the
    bacterial infection she has had for so long. For over
    nine years I naively let her health deteriorate and
    allowed the spirochetes to make themselves very much
    at home. I should have followed my instincts and thought
    outside that box much sooner.

    Jane Colley
    22 July 2006
  2. Pianowoman

    Pianowoman New Member

    Thanks for one more post that shows us there is hope.

  3. NyroFan

    NyroFan New Member


    What a story! Poor girl, so sorry for what she is going through.

    P.S. I am a lurker on a listserv group. I think you are on that too. Am I mistaken. (Only if you want to answer, no problem).

  4. victoria

    victoria New Member

    If it hadn't been my own positive response to the Marshall Protocol, thus proving to me I have some kind of stealth pathogen altho I don't know what (tests are unreliable), I know that my son would have experienced the same as that woman's daughter.

    By 17 he had been suffering increasing cognitive and physical symptoms, had lost 10# for no reason, had very low BP and pulse. Internist agreed SOMEthing was wrong, but had no clue where to send him when his blood tests came back 'normal'.

    At that point I took him to the best Lyme-Literate MD (LLMD) in the southeast, 200 miles away........... he came up positive with Lyme according to CDC's strict standards on blood tests. No he had not visited the lyme-endemic areas, but grew up spending most of his time outside in our rural area in NE Georgia.. so I'm not really surprised.

    His teen years were effectively ruined.... he is turning 19 in a few weeks, it has been very slow in getting better, but he has gained 15#, and has a normal BP and pulse at least. He still has a long way to go even after 14 months of treatment. Some just take a long time to get better, others it can happen quickly for.

    I really hope you all take ALL the stealth pathogens seriously!


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