ANY FELLOW AUSSIES OUT THERE

Discussion in 'Fibromyalgia Main Forum' started by harmony21, May 31, 2007.

  1. harmony21

    harmony21 New Member

    AM GETTING SO FRUSTRATED WITH THIS THING!!!! I HAVE BEEN DIAGNOSED WITH FM ALL MY TESTS COME BACK NORMAL, TO MY

    FRUSTRATION, I WANT SOMETHING TO COME UP NOT RIGHT SO THIS CAN BE ADDRESSED.

    IF THERES ANY FELLOW AUSSIES OUT THERE WHAT MANAGEMENT PLANS AND MEDICATIONS ARE YOU ON, CONVENTIONAL OR ALTERNATIVE?????

    ANGEL HUGS TO YOU ALL
    CONNIE
  2. harmony21

    harmony21 New Member

    THANKS FOR KIND WORDS RE PIC THAT WAS ON A GOOD DAY AND DISTANCED hee hee......

    WHAT DO YOU DO FOR YOUR CFS IF YOU DONT MIND ME ASKING?????


    BEEN DIAGNOSED LESS THAN A YEAR SO AM TOTALLY CONFUSED AND FRUSTRATED ( MY FAV WORD)

    FRIEND OF MINE WITH FM IS ONLY ON STAR SEED OIL EXTRACT/OIL AND SOMETHING ELSE ALONG THE SAME LINES AND SHE SWEARS BY IT

    I HAVE SPEND SO MUCH MONEY TRYING TO FIND SOMETHING THAT HELPS, THE SOURCE IS JUST ABOUT COMPLETED.....

    HOPING TO HEAR FROM YOU SOON
    ANGEL HUGS
    CONNIE
  3. monalisa3

    monalisa3 New Member

    I am a fellow Aussie. Live in Sydney. I too suffer from Fibromyalgia. In terms of conventional meds I'm on Lyrica and valium. Also on magnesium powder, vit C and zinc drink.

    At the moment I have found this pretty good doctor whom I've been seeing a couple of months. He is an alternative GP who is big on nutrition. He's got me on a high protein and gluten free diet and lots of green tea. He gives me IV injections of Vit C, Magnesium, Vit B and Zinc. He ran some tests on me and found lots of little things (as he called it) going on. A bit of underactive thyroid, insulin resistance, gluten intolerance (but not Celiac Disease), low on many vitamins and minerals including Vit D, zinc, iron, magnesium etc.

    He has diagnosed me with gut dysbiosis. He thinks a lot of my problems (fibro, inflammation, low immune system and fatigue) are due to or can be explained largely by the dysbiosis. This doctor got me to do a stool analysis with a reputable company in Melbourne. You should check out this place. The website is http://www.bioscreenmedical.com/ The stool test found I have a huge imbalance of bacteria in the gut. I have an overgrowth of strep and other gut stuff going on too like candida.

    I am going to see him again on monday and he's going to give me a treatment plan to heal the gut. I know he wants me to take probiotics, digestive enzymes, olive leaf extract and a specific antibiotic from a compounding pharmacy to start with. He does NOT give antibiotics easily and is actually against them. He is convinced my gut problems are the result of too much antibiotic use my whole life. He said that I am to take these specific antibiotics in this situation to help kill off the huge strep overgrowth in my gut. He said it's imperative to heal my gut. He is going to go through the treatment plan on Monday with me. He actually said he believes I will feel better (less muscle pain, clearer thinking, less fatigue, stronger immune) once the strep is dealt with and the gut gets healed.

    He also agrees that my mercury fillings need to come out but he wants to build up my immune a little first so that I can better cope with the mercury removal.

    Will try his approach, I guess it can't hurt and these issues do need to be dealt with. I am keen on removing my amalgam fillings in a couple of months. I bielive my problem is toxicity (mercury and from gut dysbiosis). Looking forward to getting this treatment underway.

    Cheers (sorry if I rambled in this post)
  4. harmony21

    harmony21 New Member

    NICE TO MEET YOU TOO, YEAH, DONT KNOW IF I ALREADY STATED THIS BUT AM ON LYRICA FOR THE PAIN, LEXEPRO FOR DEPRESSION/ANXIETY AND CODALGIN PAIN KILLERS......

    AM SO CONFUSED HAVE ONLY BEEN DIAGNOSED FOR 12 MONTHS AM VERY TIRED AT THE MINUTE (HAVE HAD TO GIVE UP WORK) AND I FIND IT VERY OVERWHELMING

    BEEN TO A NATUROPATH WHO SAID I HAVE THYROID DEFICENCY, NOT TO THE DOCS TESTS NORMAL, ANDRENAL DEFICIENCY, TESTS NORMAL, AND DPRODUCTIVE HORMONE ABNORMALITY, POSSIBLY AS I

    AM MENOPAUSAL! SHE WANTED ME TAKE 300.00 DOLLARS WORTH OF SUPPLEMENTS, SORRY CANT AFFORD
    VIT B12 NORMAL, VIT D DEFICIENT ANTHING ELSE NORMAL BASICALLY

    NATUROPATH DOESNT WANT A BAR OF ME NOW AS I HAVE BEEN HAVING ADDITIONAL SEIZURES (PETIT MAL) AND HIGH BLOOD PRESSURE

    NOW MY FEET ARE SWOLLEN N HURTIN......


    SO WHY DONT I FEEL NORMAL??????

    HOW LONG HAVE YOU HAD FM FOR?????

    THANKS FOR INPUT, HOPING TO CHAT AGAIN
    CONNIE



  5. monalisa3

    monalisa3 New Member

    I am sorry you are sufferring with additional things such as your swollen feet and high blood pressure. I also don't feel normal on most given days and am only 34 yrs. For this reason I have lost all faith in most doctors.

    I have had full blown fibro almost 2 years now but reckon it's been creeping up on me from before that. Been diagnosed bu reumatologist about 5 months ago. And 2 other doctors since then. My FM symptoms are mainly in neck and shoulders. I get severe muscle spasms and tightness there. Also neuralgia in hands and left foot. I get occassional left leg pain too. I wish someone could make my neck/shoulder sufferring go away. It is severe most of the time.

    I am a primary school teacher. Have LOVED my job for the past 11 years. It's getting hard keeping up with the work these days.

    I understand your frustrations because I too feel that way. I am young and have my life a head of me, but feel like this FM thing is robbling me of so much.

    Nice meeting you and stay strong. We WILL figure this out!
  6. becc

    becc New Member

    Good to have you here! I've just replied to your post in 'The 3 protocols on this board' with some info about treatments in Australia.. just so you don't miss it :)

    I hope you're coping ok with the cold weather! My apartment's freezing tonight...

    Bec :)
  7. harmony21

    harmony21 New Member

    I TOO WORKED AS AN ITEGRATION AIDE FOR THE LAST 20 YEARS IN THE PRIMARY SYSTEM!!!!! ENOUGH TO GIVE YOU FM TO START WITH I RECKON......

    DONT KNOW HOW YOU DO IT AS A TEACHER THE PRESSURE IS SO ON YOU GUYS......

    IS THAT LEAKY GUT WHAT YOU ARE TALKING ABOUT.....

    I AM TRYING OLIVE LEAF EXTRACT, AM ON MAGNESIUM, AND FLAX SEED OIL THATS ABOUT ALL I CAN TAKE ON AT THE MOMENT.

    MY PROB IS THOUGH AS TO GOING TO NATUROPATHS, THE ONE I WENT TO WIPED ME AS A ALSO SUFFER FROM PETIT MAL EPILEPSY AND WANTED ME TO GO OFF ALL MEDS

    NO, NO IF ANYTHING HAPPENS THEY TAKE ME TO A COVENTIONAL HOSPITAL NOT ALTERNATIVE!!!!

    SO LITTLE THINGS I WILL TRY BUT AS FOR GOING OFF ALL MEDS??? I DONT THINK SO

    KEEP IN TOUCH LOVELY TO BE EMAILING YOU......

    HEALING LIGHT AND ANGEL HUGS
    CONNIE
  8. harmony21

    harmony21 New Member

    THANKS GUYS KEEP IN TOUCH SENDING YOU LOTS OF HEALING LIGHT AND ANGEL HUGS

    CONNIE
  9. deliarose

    deliarose New Member

    Blake Graham .. a naturopath in Perth?
    He had CFS and recovered I believe.

    If you google him, he has a website. He also posts to the CFSFMexperimental yahoo health group where I came across him.....

    Also, a quick plug for the methylation protocol.

    I have been doing this for 3 months, and have been on transfer factor for 7 or 8. I am getting better and better by the day. I have come a VERY long way.

    I'm hopeful this is the road back, but the acid test will be getting back to work and sustaining a recovery.

    Delia
  10. harmony21

    harmony21 New Member

    thank you for your response, will google him and see what happens but as I said I had a naturopath and she wiped me as I have too many things not right with me......

    One of the other ladies also had a name of some one in melb and am waiting for her to reply with the name

    Yeah think Iam not ready for MP just yet, think you have to work yourself up to levels, am still trying the little things, where there is consistent positive response from

    all who are on the program I will be a bit more confident to try it....

    am glad you are feeling better and hope it continues so, keep us informed on your process......

    luv and angel hugs
    connie
  11. monalisa3

    monalisa3 New Member

    Hey there,

    You made me giggle in your 2nd sentence "Enough to give you Fm to start with". It certainly rings true! Teaching can be VERY VERY taxing, stressful and exhausting at times. Teaching also requires you to be well 100 % of the time. If on any given day or moment you aren't feeling well, you can't sit down and take it easy or have a rest , you have to teach and act like you're well no matter what.

    But working with children has many benefits too. They make you laugh and you feel better. Working with children keeps you very very busy and that is a good thing because you don't have much time to stop and think about your pain and misery during the teaching day, you kinda just push on through most days. The fatigue can make it very diffcult some days, especially when you realise you can't do all that you used to do before. Teaching is certainly a difficult profession for anyone with FM or CFS. But I'm managing for now and if anything it is good for me.

    Yes, dysbiosis is pretty much Leaky Gut Syndrome, where there is a severe imbalance of bacteria, overgrowth of candida or parasite infestation in the small and/or large intestine.

    I would not go off the meds either, just because one naturopath told you to. Thank goodness you didn't. Don't even worry about it. This alternative GP I am seeing has only told me to lay off the broad spectrum antibiotics. He hasn't meddled with any other medications I was previously taking.

    Personally, I have come to the realisation that convetional medicine is excellent for acute problems and can fix people up by doing surgery, prescribing medication etc. Unfortunately, conventional medicine (to me) is lacking in helping people with chronic health issues. That's why I am exploring the laternative path now. Whether this is the answer I guess time will tell.

    Sorry to ramble
    Have a lovely weekend
    [This Message was Edited on 06/02/2007]
    [This Message was Edited on 06/02/2007]
  12. becc

    becc New Member

    Hi again,

    The doctor I'm seeing in Melbourne is Dr. Lewis. He's in Donvale and his practice is called 'CFS Discovery'. He has a website.. not sure if I can give the URL for it here but google CFS discovery and it should come up :) He's very thorough and very friendly.

    If you don't mind travelling, there's Dr Ian Buttfield in Unley, SA, Dr Richard Burnet in Norwood, SA and Dr John Graham in Clarendon, SA, although I'm not sure if he's taking new patients at the moment.

    Hope that helps :)

    Bec
    [This Message was Edited on 06/02/2007]
  13. dirtchick

    dirtchick New Member

    Hi,
    This is my first post. I am in Melbourne and was diagnosed with CFS earlier this year. Believe i have had it for at least the last five years, maybe 7years.
    Frustrating only begins to cover how it feels. Have noticed alot of pain in the last twelve months and just starting to get a little relief with pain meds.
    Have been tried on different meds this year but none of them agree with me. Lyrica made me forget everything and brain fog was worse than ever so went off those. No help with the pain.
    I am a sole parent with three wonderful children and we are all adjusting to the huge changes in our lives.
    Obviously alot more i could say but will do it over time.
    This board has been fantastic as have been lurking around for the past few months.
    Take care,
    Barb
  14. monalisa3

    monalisa3 New Member

    Welcome dirtchick. This board is a great place with many wonderful people.
  15. harmony21

    harmony21 New Member

    WHICH PART OF MELB ARE YOU IAM IN MELTON, THE DREADED WESTERN BURBS.....

    WOULD LIKE TO KEEP IN TOUCH WITH YOU ALL, STRANGE ISNT IT LYRICA HAS SO HELPED ME WITH THE PAIN AND BRAINFOG AND YET THE OPP TO YOU!!!!

    AM TRYING TO GET BETTER BY DOIN G THE SIMPLE THINGS LIKE IMPROVING MY DIET, A LITTLE STRETCHING ETC AND TAKING ANTI OXIDENTS, MAGNESIUM, JUICES AND WHEAT GRASS

    MONA LISA RE SCHOOL YES SO AGREE WITH YOU RE CHILDREN BUT WORKING WITH SPECIAL NEEDS KIDS VERY TAXING AND SINCE IAM A LODER CHOOK HAVE DECIDED RETIREMENT THE WAY TO GO

    LOVE N ANGEL HUGS

    PS THIS DOC IN PERTH HE IS PROB IN REMISSION AND IF HE HAS CFS DOES THAT REALLY APPLY TO THOSE WITH FIBRO SHICH IS WHAT I HAVE.....

    OH ME OH MY ITS ALL SO CONFUSING

    CONNIE
  16. dirtchick

    dirtchick New Member

    I am on the other side of Melb. near Mornington Peninsula. Beautiful spot. Is very true when they say something can work great for one person and have horrible effects on someone else. Am also taking magnesium and looking into other things. Amazing how getting around to things seems to take so much longer.

    Monalisa3 and sweetpotatoe thank-you for the welcome. Have found some terrific info on this sight. Is hard sometimes being a sole parent but even harder being so sick alot of the time. Just have to keep believing that "one day" things will get better.

    Take care
    Barb.
  17. harmony21

    harmony21 New Member

    BUMPITY, BUMP
  18. butterfly8

    butterfly8 New Member

    Dear Harmony21

    Hi. I havefm/cfs/me - whatever they like to call it. Diagnosed 8 years ago. Live in Brisbane. Lived in Melbourne for 9 years and loved it.

    I read you are in Melbourne - I have various tests done through Australian Reference Laboratories in Melbourne. e.g., saliva tests, "po" tests. etc.

    Has your doc. suggested you get any of these? - they showed that my adrenals were exhausted and that I have digestive problems. He has me on low cortate and a t3,t4 compound, D3, iodine- all CHEAP as well as a few other things - none of which are expensive, except for the olive leaf extract.

    I also had my thyroid ultrasounded and it came back showing that I have hypothyroidism. My doc. reckons that that is at the base of my problems, but not the only problem that has to be fixed. Check out drlowe.com.

    I agree that you should approach any treatment that costs a lot with a great deal of caution. I have spend a fortune on stuff that just went right through me. If your thryoid cannot utilise herbs, medicine etc., and if your gut/stomach cannot digest it, why buy it? I found, with the help of my doctor, that until the basics are working nothing much helps.
    [This Message was Edited on 06/04/2007]
  19. dinilaa

    dinilaa New Member

    Hi to all my fellow Australians

    Melbourne here. Have FM & CFS and a few other things. Was diagnosed with FM 4 years ago (but had it longer) and struck down with severe CFS not long thereafter.

  20. harmony21

    harmony21 New Member

    it gives my a warm and fuzzy feeling hearing from you all..

    No butterfly8 i havent had all those tests done only through the docs......Andrenal normal, thyroid normal all other tests to rule out anything else negative except for Vit D it was very low.

    Am taking magnesium, Olive Leaf Extract, Vit D and Enzyme Q10, I hve a fibro juice and shot of wheat grass 2 - 3 times a week, lyrica, lexapro and strong pain killers, Pariet for heartburn

    Cant think of anything else, had heaps of other supplements but have taken my self off everything for a while and have now gone back on some of them

    Cant take Vt B it makes me sick, trying to eat well but still too tired to get motivated most days

    have beeen to couple of naturopaths with no success last one dropped me cause my seizures were uncontrolled, fair enough too.....

    Am too tired to go to other docs and it stresses me out so much it takes me days to recoup

    whinge, whinge sorry

    angel hugs
    Connie