ADELAIDE, Girls Bec, Metrogirl Lease79 ??

Discussion in 'Fibromyalgia Main Forum' started by cobie, Oct 18, 2005.

  1. cobie

    cobie New Member

    Hi, Wondering how your going? Haven't seen any posts since june.? Metrogirl have you started your Doxycline, or Tfs.? cheers Cobie
  2. becc

    becc New Member

    Hi cobie :)

    Nice to hear from you. I was wondering where all the Australians have been...

    I'm up and down - heading into the last month at uni for the year so I'm pretty exhausted. Lots of essays and a couple of exams to prepare for. Looking forward to the break!

    I've been seeing a new doctor and am having some luck - he did a lot of blood tests that I haven't had before and found several problems so he's treating them. Very low Vit. D, low potassium, low magnesium, low DHEA... and a couple of others I've forgotten. I'm having Vit. B12 injections twice a week which seem to clear my mind a bit for a couple of days. He's also put me on Baclofen to supplement my other pain treatments. Neither of us is really sure which of the above treatments did it but my lower back has been numb for years and that's now gone which is very nice :)
    He's also trying to raise my blood pressure to open up my veins - my veins are very narrow so my circulation is poor and may be (partly?) responsible for my symptoms.

    I'm not really feeling much better yet, symptom-wise, but I'm able to do more than I was 6 months ago which is definitely an improvement. So I think I'm a bit better than I was but pushing myself too hard as a result.

    How have you been? Hope you're feeling ok. Do you find summer easier or harder than winter? I think most people with CFS tend to feel worse in winter but I've always been the opposite so I'm hoping it stays cool for a bit longer :) Hope summer helps you!

    Take care,

  3. cobie

    cobie New Member

    Hi, Bec, Thanks for reply,sorry to hear your up and down as opposed to being up up up. I have read some where that if you do swing you have a better chance of staying up,rather than staying constant. A Glimmer ?The swings for me are extremes from 6 weeks ago thinking i could get back to work now back to bed and house bound. B thing. Who is your Dr ? Does he believe in Prof Kenny Delemier[spelling] stuff.? have you tried Doxycycline ? or what does he think of the Marshall protocal? Marshall recently did an interview on our local radio, I only got the last few seconds but it will appear on the local radio web site[ Mornings with Liam Bartlett abc] Good luck with your new Dr let me know how you go. At least your exams will be over soon good luck with that. Im a bit like you not looking forward to the summer, to hot to much glare, I sleep better in winter.Would that be something to do with marshalls idea that vit d helps the mycoplasma replicate ????? Ive actually booked to see Dr Don lewis in melbourne!!!!not till march hope i can get there! Cheers for now .Cobie
  4. lease79

    lease79 New Member

    I'm still here, I post replies a bit, but don't generally start threads of my own much.
    Up & down here as well. Still having a lot of trouble with the sinus tach & skipped beats, trouble breathing, but everything is supposedly normal *sigh*.
    I've been in a bit of a flare again from pushing it two hard & have wound myself up in the Emergency Department twice :(
    Apart from that everything around here is pretty normal, the kids are all doing okay, hubby's working lots...
    Thanks for asking ;)

  5. cobie

    cobie New Member

    Hi Lease79, Sorry to hear youve been in the ED. yuk hope you didnt experience too much rolling of eyes when you said you had cfs ? Hope things settle down for you . cheers Cobie
  6. becc

    becc New Member

    Hi Cobie,

    Sorry to hear you're so bad at the moment. What a rapid change! :(

    My new doc is Dr Richard Burnet - he specialises in CFS (amongst other things, I think). Very knowledgeable about CFS. I haven't asked him how much of Prof. de Meirleir's work he believes in/uses. He took part in the CFS specialist conference while Dr de Meirleir was here, though, so probably knows quite a lot about it.

    I still see my original CFS specialist, Dr Buttfield, once a month and I've asked him what he thinks of it all - particularly HHV-6. He was going to look into it and let me know. He's researched the Marshall Protocol and doesn't really like the look of it. Said he'd be happy to do it with me if I wanted to but wouldn't really recommend it. I think he thinks it would be too hard to stay out of the sun in Australia.. though I think a few of us with severe ME/CFS could probably prove him wrong! :) Given how low my Vit. D levels are, he seemed to rule it out pretty quickly. He also said that one of the anti-biotics used in the protocol is not available in Australia. I'll check the website to see if the interview's up. Would be interested to hear it - I've read a bit about the protocol but not a lot.

    I've been on doxycycline for years and have tried a few other anti-biotics relatively-long-term for Rickettsia. I didn't have much luck with them but have wondered if I went off them too quickly. Have you been tested for Rickettsia?

    Good luck with Dr Lewis. I made an appointment to see him earlier this year but wasn't well enough to go to Melbourne at the time so had to cancel. Let us know how it goes :) I can't believe how long the waiting lists for CFS doctors are getting!

    Take care,

  7. lease79

    lease79 New Member

    No, not too much eye rolling. I always say that I have fibromyalgia, I am more hesitant to throw in the CFS diagnosis.
    The fibro one seems to be enough to have them write whatever is going on, off as fibro quick smart :(
    Thanks for asking, Oh & Cobie... You need to fill in your Profile :p
  8. cobie

    cobie New Member

    Hi Bec,
    How are you going? Whats your current treatment? are you still seeing Dr Burrnett? Ive been following Rich Van Kronenburgs ideas of improving the methylation cycle. Iv'e been on Dmsa since May to get rid of mercury and other heavy metals. so will see how that goes ... it all seems such a slow process this fighting the cfs. Hope your well in Adelaide . Love to hear from you ................ Cobie